2016 Crohn's & Colitis Australia IBD Toolkit

THE INSIDE STORY

A TOOLKIT FOR LIVING WELL WITH IBD

ACKNOWLEDGEMENTS The publication of The Inside Story: A Toolkit for Living Well with IBD was supported by an educational grant from Janssen (Janssen-Cilag Pty Ltd).

Crohn’s & Colitis Australia (CCA) also gratefully acknowledges the contribution of the following individuals in the publication of this book: • Dr Jane Andrews Gastroenterologist and Head of IBD Service and Education Department of Gastroenterology and Hepatology Royal Adelaide Hospital, Adelaide SA • Dr Daniel van Langenberg Head of IBD Service, Eastern Health VIC • Dr Mark Lewis Consultant Colorectal Surgeon, Department of Colorectal Surgery Royal Adelaide Hospital, Adelaide SA • Dr Jaci Barrett Accredited Practicing Dietitian and Registered Nutritionist • Anita Reilly IBD Helpline and Queensland State Coordinator Crohn’s & Colitis Australia Disclaimer All materials provided by Crohn¹s & Colitis Australia (CCA) are for information purposes only and do not constitute any form of medical advice. It is important that each individual seeks personal advice from his or her treating specialists about treatment and care options, including those discussed within this book.

Copyright 2015. All rights reserved. No part of this publication may be reproduced or transmitted without written permission from Crohn¹s & Colitis Australia.

CCA is also thankful to the following members of the IBD community for granting us permission to publish their photographs in this book: Stephanie Backer Charli Baker Katherine Barbadonis Tomas Bowles Isabella Chiriff Katrina Chambers Grace Comerford Sarah Gill Michael Hayes Di Holbrook Kristie Hopkins Daina Hyatt Francesca McMillan Avis Mulhall Brittani Nicholl Emma Osborne Hayley Press Hayden Rohringer Phil Sawyer Isobel Sidler Riley Single Isabella Suta Jaxsen Slater Charlotte Streets Teo Tissue Bayly Turner Olympia Unwin Lewis Walker Megan Ward Emerald Waldie

Crohn’s & Colitis Australia™ (CCA) Office Address: Suite 4/363 Camberwell Road Camberwell, Victoria 3124 Australia T: 61 3 9815 1266 www.crohnsandcolitis.com.au

CONTENTS Foreword 2 Impact statement 3 Section 1

I ntroduction to The Inside Story: A Toolkit for Living Well with IBD

5

Section 2

About Crohn’s & Colitis Australia™

9

Section 3

Introduction to IBD

15

Section 4

Ulcerative Colitis

21

Section 5

Crohn’s disease

25

Section 6

Medications in IBD

31

Section 7

Surgery in IBD

41

Section 8

Complications of IBD

47

Section 9

Diet and nutrition in IBD

55

Section 10 Emotional effects of IBD

63

Section 11 Sexuality and IBD

71

Section 12 Fertility, pregnancy, and IBD

77

Section 13 Children and adolescents with IBD

87

Section 14 Education and IBD

99

Section 15 Travelling with IBD

105

Section 16 Private health insurance and IBD

111

Section 17 Living well with IBD

117

Section 18 Resources and services available for people with IBD

125

Section 19 Glossary of terms for IBD

133

FOREWORD Many people who have been recently diagnosed with inflammatory bowel disease (IBD) find themselves relieved to finally have an answer to the symptoms that have been troubling them for months, even years.

Finding the answer to one question however—especially one relating to a medical diagnosis—frequently leads to dozens of new questions about the nature of the illness, the treatments available, and the lifestyle changes that it might call for.

Your medical team should be the key source of information about your individual treatment plan, especially since every IBD case is unique. On the other hand, it can be extremely useful to have information readily available about general aspects of the disease and how it affects those who have it. Those with IBD share common concerns about food, lifestyle, exercise, sex, education, and puberty development, to name a few. This is why we developed The Inside Story: A Toolkit for Living Well with IBD. The Inside Story is a general reference guide written for you as someone who has IBD or is caring for someone who has IBD, such as a son or a daughter.

The first edition was published in 2009. Since then, we have learned more about the disease, new research has been conducted, and new treatments explored and developed. This second edition therefore contains updated information, which we are confident you will find most useful.

This toolkit covers many of the most common concerns of those living with IBD. Each chapter covers a particular topic, and can be read by itself as needed. To provide a medical overview, however, one of the first chapters deal with the general nature of IBD, followed by a separate chapter each on Crohn’s disease and ulcerative colitis. The book also contains a chapter on online resources and references, and ends with a glossary of terms.

I hope that you will find The Inside Story: A Toolkit for Living Well with IBD a useful resource for managing your condition, learning about treatment options, keeping optimistic about the future, and truly living well.

Kind regards

Francesca Manglaviti Chief Executive Officer Crohn’s & Colitis Australia

IMPACT STATEMENT No one suffers from IBD. For over 30 years now, Crohn’s & Colitis Australia (formerly the Australian Crohn’s and Colitis Association) has been making life more liveable for over 75,000 Australian men, women, and children living with inflammatory bowel disease (IBD).

Crohn’s & Colitis Australia (CCA) is a not-for-profit organisation governed by a board of directors who represent the IBD community.

OUR VISION Support for today, a cure for tomorrow.

OUR MISSION To support the Crohn’s and ulcerative colitis community with a focus on confidential support programs including education, advocacy, counselling, increasing awareness, and generating and utilising funds for research and support.

SECTION 1

INTRODUCTION TO THE INSIDE STORY: A TOOLKIT FOR LIVING WELL WITH IBD

What is IBD? An inflammatory bowel disease (IBD) is a chronic inflammatory condition that affects parts of the digestive tract, but most commonly involves the small and large intestines. The most common diseases are ulcerative colitis and Crohn’s disease.

Ulcerative colitis affects the large intestine (colon), while Crohn’s disease can affect any part of the gastrointestinal (GI) tract, from the mouth to the anus.

6 | The Inside Story: A Toolkit for Living Well with IBD

How can this book help you?

Important to remember

If you’ve recently been diagnosed with IBD, it’s fairly certain you’ll be feeling a variety of emotions. On one hand, you might feel relieved to finally have an explanation for your symptoms and the way you’ve been feeling.

The Inside Story is not intended to take the place of discussing your condition with your gastroenterologist, general practitioner, and IBD nurse. It is best regarded as a resource to help you learn more about your condition, and help you ask important and relevant questions when consulting with your clinical team.

On the other hand, you probably have a million questions, such as:

Please note: In some sections of The Inside Story— especially those that describe the condition and its diagnosis and treatment—we’ve had to use some medical or technical terms. We’ve done our best to make the meaning of these terms clear within each section, but for a quick reminder at any time, you can also refer to the glossary found at the end of the book.

• What exactly is IBD? • How did I get it?

• Why did I get it?

• How is it treated?

• Will my life ever be normal again?

• What does it mean for my future?

At the time of diagnosis I was incredibly upset. But once I knew it had a name and it was not just me being unwell, in a sense it was a relief.

The Inside Story: A Book for Living Well with IBD is meant to answer these questions and many others you might have about IBD. It covers a wide range of topics relevant for people living with IBD, especially those who’ve only just been diagnosed. As you work your way through The Inside Story, you’ll learn more about your condition and how it’s treated. You’ll also find straightforward information on the nature of IBD and how it can affect your life, as well as advice and strategies on coping.

People shouldn’t give up on things just because they have inflammatory bowel disease. If you’re determined, you’ll get to where you want to go.

Armed with knowledge about your condition, as well as practical advice and support when you need it, you’ll be able to live well with IBD and take an active role in managing your own health.

SECTION 1 Introduction to The Inside Story: A Toolkit for Living Well with IBD | 7

SECTION 2

ABOUT CROHN’S & COLITIS AUSTRALIA™ Formed in 1985, Crohn’s & Colitis Australia™ (CCA) is a non-profit organisation and the national peak body that represents approximately 75,000 Australians living with Crohn’s disease or ulcerative colitis, two chronic illnesses collectively known as inflammatory bowel disease (IBD).

We aim to deliver services that inform, support, and care for people living with IBD in Australia and to promote research aimed at finding a cure.

How CCA can help you The effects that IBD has on the body, its impact on peoples’ lives, and the various treatment options can be overwhelming and often gives rise to a multitude of questions, fears, and anxieties.

Our role is to support our members by providing services to help them cope with their condition, and information to enable them to make sound decisions about their care.

CCA has been a great help to me.

I joined two days after I was diagnosed.

They make sure you know you’re not on your own, that they’re there to support you.

• We give our members access to the latest information on IBD treatment options, research, and support services.

• We provide national education programs that give those living with IBD the knowledge and skills to better manage their illness.

• We raise funds that contribute to the running of a national support group program, a research grants program, information and awareness campaigns, and a telephone helpline for those whose lives are affected by IBD, including families and carers.

• We strive to create awareness of IBD in the community, and reduce the stigma associated with IBD. • We are the main voice for lobbying and building awareness of IBD in Australia.

10 | The Inside Story: A Toolkit for Living Well with IBD

Our services Becoming a CCA member has certainly been a big help to me through good times and bad. I know I can always count on the forum or the helpline or the support group for whatever support I need.

Volunteer Teams (VTs) Launched in 2013, our VT program enables us to extend our reach to Australians with IBD, no matter where they are in the country. Each VT makes up a CCA branch run solely by trained volunteers. Our goal is to reach communities— especially those in remote parts of the country—and provide relevant services to CCA members wherever they might be.

CCA exists to make life liveable for you and others who have IBD. Our programs and services are designed to help you manage your symptoms, give you relevant information, offer opportunities for you to connect with others in your community, and make you feel supported and less alone.

IBD Helpline – 1800 138 029 The IBD Helpline is a free service that offers support, information, advice, and referrals to members and non-members alike. It is staffed by a highly experienced IBD counsellor who provides professional support and advice.

IBD forums Our IBD information forums provide much-needed specialised information for people with IBD, as well as their families and carers. Particularly useful for those recently diagnosed, the forums offer participants latest information, resources, support, and connections with the local community.

Research Along with all our members and the thousands who have IBD, we look forward to a day when a cure for Crohn’s disease and ulcerative colitis is found.

Research holds the key to such a future, and we at CCA raise funds and invest significantly in research projects.

We also support research aimed at discovering better treatment for those living with IBD and at arriving at earlier diagnoses. To better lobby government, businesses, and the media on behalf of our members, we also support social and econometric research that keeps us updated on the latest statistics in social trends relating to IBD.

Peer-support programs I want people to know what I’ve been through and I want people with IBD to know that they’re not alone.

IBD support groups Our support group meetings provide a safe and supportive environment where those affected by IBD—including parents and families—can express themselves openly and receive support and understanding from others in similar situations.

Visit our website for the support group nearest you.

Youth camps Many adolescents with IBD feel isolated from their peers and are at risk of depression and anxiety.

Our youth camps bring together teenagers living with IBD for three days of fun, adventure, and activities. We give them a chance to be with peers who share similar experiences.

While some are reluctant at the start, by the end of the three days, nearly all of them leave with new friends and a renewed sense of self.

Information on upcoming youth camps is available on our website.

As a parent of a child who went to a CCA youth camp, I found it a wonderful opportunity for fun and the forming of lifelong friendships. I’ve never seen my daughter feel so comfortable with others so quickly.

SECTION 2 About Crohn’s & Colitis Australia™ | 11

Awareness

IBD Quality of Care Program

Increasing community awareness about IBD and about our work at a local and national level is vital to achieving our mission.

As part of our mission of improving the lives of those with ulcerative colitis and Crohn’s disease, in 2013 we commissioned PricewaterhouseCoopers Australia (PwC) to update existing IBD national health economic and prevalence data.

IBD in the media A key strategy for raising awareness has been through positive news stories in newspapers, on television, on radio, and on the Internet. In recent years, we have been attracting growing media coverage. As more and more Australians become increasingly aware of IBD, the barriers to open communication will diminish, and it will become easier to talk about the condition without embarrassment or fear of stigma.

Can’t Wait Program If you’ve been diagnosed with Crohn’s disease or ulcerative colitis, as a CCA member you are entitled to CCA’s Can’t Wait Card. This valuable card offers you access to toilet facilities of participating businesses.

Equally important, it educates businesses about IBD and its effects on those who have it, and gives them an opportunity to help.

A complete list of all of our Can’t Wait Program affiliates is available online at www.cantwait.net.au

12 | The Inside Story: A Toolkit for Living Well with IBD

This report, Improving Inflammatory Bowel Disease Care Across Australia, identified significant geographical variations in access to quality care, and found that the current model of care was inequitable. It recommended that CCA seek funding to assess existing services in hospitals across Australia.

In 2014, we obtained federal government funding as well as the endorsement of the peak learned bodies representing key health stakeholders to develop National Standards of Care, and to perform a national IBD Audit. The aim of this two-year project is to improve IBD care for patients in Australia by: • examining the provision and organisation of IBD care throughout Australia; and • providing an evidence-based case for increased IBD resources that is consistent with national needs, is supported by the key stakeholder groups, and aligns with government policy objectives.

Fundraising Our work would not be possible without the generous support of donors, members, and businesses.

Donations We accept donations year-round, and we use the funds to deliver services to the community. Donations can be made online through our website. All donations over $2 are tax-deductible.

Changing Lives Challenge Run, swim, or ride for CCA! Join CCA’s Changing Lives Challenge and get fit while doing it. The funds raised go towards our youth camps, information forums, support groups, online services, and Can’t Wait Program.

Workplace Giving Workplace giving is a simple and effective way for employees to donate regularly to CCA. It is voluntary and simply involves employees nominating CCA as their charity and specifying a monthly amount to be donated through their payroll system. This can be just a couple of dollars to several hundreds per month.

CCA is a registered charity with the Charities Aid Foundation’s Workplace Giving program.

Regular giving Regular giving is an easy way to support us on an ongoing basis. Each month, your nominated amount is automatically debited from your credit card.

In memoriam While the loss of a loved one is a sad occasion, it is also an opportunity to give hope to thousands of Australians who are living with chronic conditions, including IBD. Families can request that donations be made to CCA in lieu of flowers.

Bequests Leaving a gift in your will to Crohn’s & Colitis Australia will help us make a positive difference to people with Crohn’s disease and ulcerative colitis, their family, friends and carers.

For more information on fundraising, please visit our website, e-mail us at info@crohnsandcolitis.com.au or phone us at 1800 138 029.

SECTION 2 About Crohn’s & Colitis Australia™ | 13

SECTION 3

INTRODUCTION TO IBD In this section, we’ll talk about the impact of IBD on living a normal life.

We’ll also try to give you a better understanding of Crohn’s disease and ulcerative colitis, as well as how they are diagnosed and treated.

Who gets IBD? It is estimated that about 75,000 Australians have IBD, whether it be a diagnosis of Crohn’s disease, ulcerative colitis, or colitis in another form. IBD can occur at any age, but it is most commonly diagnosed for the first time in people between the ages of 15 and 35. It is equally as common in males and females, and is present in most populations across the world, to varying degrees.

New estimates show that by the year 2022, the number of people living with IBD in Australia will reach 100,000.1

What happens when I have IBD? Before I was diagnosed with Crohn’s disease I believed that in time I would simply get better and that the pain would disappear. After I was diagnosed, I had to face the fact that I had a chronic condition that I would live with for the rest of my life. I was 14 years old at the time and, suddenly, it felt like my world was crumbling around me. Now, through the support of friends and family and the information provided by CCA, I feel that I can live a normal life.

16 | The Inside Story: A Toolkit for Living Well with IBD

IBD is a chronic (continuing) condition that you’ll have for the rest of your life. While it can be controlled with treatment, there is no cure as yet. Unlike the symptoms of other chronic diseases, such as diabetes, which are present every day, IBD symptoms can come and go, depending on whether or not there is inflammation in your intestines. When the intestines are inflamed, symptoms flare up and the condition is considered active. When the inflammation is less severe or even absent, symptoms might disappear altogether and the condition is considered to be in remission.

For some, the periods of remission can last for weeks, months, or even years. The usual pattern however is one of repeated flare-ups of symptoms over the course of a person’s lifetime. It is not possible to predict when a relapse might occur, even among those who have had the condition for a long time.

What causes IBD?

Will my children have IBD?

At this stage, no one knows for certain what causes IBD. The best explanation that experts can provide is that several factors come together at the same time to set off a first episode of IBD.

IBD appears to run in families to a certain extent, suggesting that genetics plays a role in developing the condition.

About 20–25% of those with IBD also have a first-degree relative (first cousin or closer) with either ulcerative colitis or Crohn’s disease, although current research shows that there is only a small chance that a person will pass on IBD down to his/her own children.

Firstly, there is likely to be a genetic susceptibility, where one or more inherited genes makes a person more prone to developing IBD. Should that person then encounter an environmental trigger—possibly, but not necessarily, a virus, bacterium, or protein—the immune system gets switched on and begins the very normal process of defending the body against a foreign substance. This process is known as inflammation, and this is where things start to go off course.

In most people, the immune response gradually winds down once the invading foreign substance has been destroyed.

In others, however, the immune system is unable to recognise or react to signals telling it to switch off, and the inflammation continues unabated. This ongoing inflammation eventually causes damage to the intestinal tract and sets off the first episode of IBD.

Was the trigger something I ate or drank or picked up?

So far, no clear links have been established between IBD and any type of food or drink. Furthermore, IBD is not contagious so it is not possible to pick it up from someone else with the condition. It is also clear that IBD is not caused by stress or other psychological factors.

On the other hand, just as any other chronic illness, IBD causes physical stresses on the body which, in turn, can lead to emotional stress. This can make the symptoms worse for a time, and/or make dealing with the symptoms more difficult. But stress does not cause IBD to occur in the first place.

Is there any link between smoking and Crohn’s disease?

It is believed that smoking increases the risk of developing Crohn’s disease and worsens the course of the disease, in that it increases the need for surgery and medications.

Smoking can make the disease more active and prevent remission. After surgery for Crohn’s disease, for example, the condition tends to recur sooner, and often more severely, among smokers than non-smokers. If you are a smoker and have Crohn’s disease, it is important that you stop smoking immediately.

No specific pattern of genetic inheritance however has been identified. This means that even in families that have a history of IBD, there is no way to predict which, if any, other members of the family will develop the disease.

Will my life ever be normal again?

It can get very frustrating; you have to change some aspects of your lifestyle.

But it is possible to have this disease and also have a life.

While it might have come as a bit of a shock to discover that you have IBD, over time it won’t always occupy the top spot on your mind, and it won’t rule your life if you don’t let it.

If your symptoms are being managed and are under control, there is nothing that can stop you from having a normal life.

There might be exceptions in the case of those with more severe disease, but these are exceptions, not the rule.

In terms of your daily routine, you’ll most likely need to make some concessions—such as taking medications regularly and exactly as prescribed (even when you’re feeling well), and visiting your healthcare team more regularly— but you’ll benefit in the long run by getting your condition under control.

It is also important to talk to those who need to know.

Discussing your condition and its impact on your lifestyle is an important aspect of your medical review. It would also help to talk to your family, friends, teachers, and/or co-workers about your situation. Give them the opportunity to support you in any way they can.

My diagnosis has brought our family closer.

We are a much stronger unit now.

1H igh incidence and prevalence of inflammatory bowel disease in Victoria: a perspective, observational population-based Australian epidemiology study, Studd, Desmond, et al., 2012

SECTION 3 Introduction to IBD | 17

What does having IBD mean for my future?

There is no doubt that IBD is a serious medical condition. During flare-ups and when the disease is active, symptoms can be troublesome, distressing, and downright embarrassing. Most people with IBD will need to take medications on an ongoing basis, even during periods of remission, to keep the inflammation in check and prevent flare-ups.

There might be times where you will need to be in hospital—for example, if you become severely dehydrated or develop a complication. At some point you might also have to face the prospect of surgery, either to treat the disease itself or for complications associated with your condition.

But the good news is that IBD is manageable: it will not necessarily take over your entire life, and the life expectancy of those with the disease is normal.

With the current range of treatment options available, most people are able to lead full and productive lives, complete with family, career, leisure activities, and travel.

I’ve lived with Crohn’s disease for more than half of my life. At times it’s hard, but I have always had the attitude that you should control the disease and not let it control you.

The bulk of this book will deal with how to manage your condition in the context of having a normal routine and living a normal life. Before we move on, though, we have to gain a basic understanding of IBD in general, Crohn’s disease, and ulcerative colitis.

What exactly is IBD? Inflammatory bowel disease (IBD) refers to a group of chronic inflammatory conditions that affect parts of the digestive tract, but most commonly involve the small and large intestines. The most common diseases are Crohn’s disease and ulcerative colitis.

Although the intestines are the major body organ affected by IBD, the condition is considered to be systemic—i.e., affecting the whole body—and can also cause inflammation in other parts of the body, such as the eyes, skin, joints, and liver.

18 | The Inside Story: A Toolkit for Living Well with IBD

How is IBD treated?

There is no such thing as a typical case of IBD. The disease affects every person differently, depending on the actual location of the disease and the severity of the inflammation within the intestines.

Some experience only occasional, mild symptoms, while others have frequent and severe flare-ups.

Treatment programs are therefore tailored to meet the needs of each individual with IBD. The major goals of treatment in IBD are: • to relieve symptoms • to achieve remission (i.e., absence of symptoms) • to maintain remission • to improve quality of life.

Medications are almost always the first-line treatment strategy for those with IBD. They work by reducing the inflammation and allowing the intestines to heal.

Over time, some people will no longer respond to medications, while others might develop extensive and severe disease that cannot be controlled by medications alone. In these cases, surgery could be an option. For some, surgery might in fact be the best option. By providing long-term relief of symptoms and reducing or even eliminating the need for ongoing use of medications, surgery offers many people with IBD an opportunity to lead a healthier and more active lifestyle.

My specialist talks a lot about the gastrointestinal tract.

What is it?

Your specialist is talking about a part of your body that plays a major role in your disease, whether it’s Crohn’s disease or ulcerative colitis.

The gastrointestinal (GI) tract is a continuous hollow tube that extends from the mouth to the anus. Its main purpose is to break down (digest) food into nutrients and then absorb these nutrients in order to supply the body with energy for growth and repair. See Figure 1 on page 19.

Food travels down the oesophagus into the stomach where it is partially digested and liquefied before being released into the small intestine. The small intestine has three segments: the duodenum, the jejunum and the ileum. The major breakdown of proteins, fats and carbohydrates takes place in the duodenum. Digestion is then completed in the jejunum and ileum. Here, foods and liquids are further broken down into their component parts: glucose from carbohydrates; amino acids from proteins; fatty acids and cholesterol from fats; vitamins; minerals; salts; and water. These nutrients are absorbed into the

bloodstream. Any food matter such as residue or fibre that cannot be digested and absorbed is turned into waste product.

From the ileum, the fluid waste moves into the colon.

The main functions of the colon are to salvage energy from the residue and fibre by means of bacterial metabolism, and to reabsorb water and concentrate any leftover waste into solid matter (faeces). The faeces then moves into the rectum where it is expelled from the body through the anus.

Mouth

What’s the difference between ulcerative colitis and Crohn’s disease?

Although ulcerative colitis and Crohn’s disease share some similarities, they also differ in important ways.

These differences help doctors diagnose between the two conditions and subsequently choose the most appropriate treatment. See Figure 2 below.

I’ve heard of someone diagnosed with indeterminate colitis. What is it?

Sometimes, a patient might present with features of both diseases, making practically impossible to distinguish between ulcerative colitis and Crohn’s disease. In such cases, a diagnosis of indeterminate colitis will be given. In fact, at the initial diagnosis of inflammatory bowel disease, 10–15% of patients will be diagnosed as having indeterminate colitis.

Oesophagus

Duodenum

Stomach

Transverse colon Jejunum

Ascending colon

Descending colon

Ileum

Sigmoid colon Caecum

Rectum Anus

Figure 1 Anatomy of the gastrointesinal tract

In the next two chapters, we will talk about ulcerative colitis and Crohn’s disease in greater detail.

Crohn’s disease

Ulcerative colitis

Location

Any part of the digestive tract from the mouth to the anus

Limited to the large intestine (colon)

Pattern

There could be areas of normal intestine between areas of diseased intestine

Usually begins at the rectum and extends up the colon in a continuous manner

Inflammation

Affects the entire thickness (i.e., all layers) of the intestinal wall

Affects only the innermost lining (mucosa) of the colon

Figure 2 Differences between Crohn’s disease and ulcerative colitis

SECTION 3 Introduction to IBD | 19

SECTION 4

ULCERATIVE COLITIS

What is ulcerative colitis?

Ulcerative colitis is a condition that generally affects the innermost lining (mucosa) of the large intestine (colon). The lining becomes inflamed (red and swollen) and tiny open sores (ulcers) form on the surface of the lining. These ulcers might bleed—in fact, bleeding from the rectum is often a first sign that something’s not quite right. The inflamed lining also produces a larger than normal amount of intestinal lubricant or mucus, which sometimes contains pus.

How does ulcerative colitis affect the intestines?

Proctitis

Proctosigmoiditis

Distal colitis

Inflammation ‘attacks’ the innermost lining of the colon known as the mucosa, resulting in bleeding and diarrhoea.

The inflammation is most often located in the rectum and lower colon, but can also involve other parts of the colon, sometimes even the entire colon.

Less often, it might involve other parts of the intestine.

Depending on the exact location of the inflammation, ulcerative colitis is known by other names:

Pancolitis

Backwash ileitis

• Proctitis: involves only the rectum • Proctosigmoiditis: involves the rectum and sigmoid colon (the lower segment of the colon before the rectum) • Distal colitis: involves only the left side of the colon • Pancolitis: involves the entire colon

Figure 3 Location of the different types of ulcerative colitis

• Backwash ileitis: involves the distal ileum.

What are the signs and symptoms?

See Figure 3 right.

The usual symptoms include: • frequent, watery diarrhoea often containing blood, mucus and pus • sense of urgency to have a bowel movement (especially when the rectum is involved)

22 | The Inside Story: A Toolkit for Living Well with IBD

• crampy abdominal pain (often because of constipation in unaffected parts of the colon) • tiredness, fatigue • loss of appetite • weight loss.

As the lining of the colon becomes more and more inflamed, it loses its ability to absorb water from the liquid waste that passes through from the ileum. This leads to watery diarrhoea, often containing mucus and pus. Among those affected, many will feel crampy abdominal pain and a strong urgency to have frequent bowel movements. It is common to feel tired and easily fatigued, especially during active phases of the disease. The tiny ulcers in the intestinal lining can easily crack open and bleed. Over time, blood loss can lead to a significant decrease in the number of red blood cells (a condition known as anaemia), which adds to the tiredness and fatigue.

It is not uncommon for those with ulcerative colitis to lose their appetite or to simply avoid eating in order to prevent further symptoms. A lack of adequate nutrition however will worsen the tiredness and fatigue and will eventually lead to weight loss. Children with ulcerative colitis might fail to develop or grow properly, particularly if they have long periods of active disease and/or receive frequent or prolonged treatment with high doses of corticosteroids.

In addition to symptoms in the GI tract, ulcerative colitis can also cause symptoms in other parts of the body. These include:

For example, low levels of red blood cells can suggest internal bleeding and the presence of anaemia. A high white blood cell count, a higher-than-normal level of C-reactive protein (CRP), or a high erythrocyte sedimentation rate (ESR) can indicate the presence of inflammation somewhere in the body • direct inspection of intestinal mucosa via endoscopy, including: – sigmoidoscopy if examination is limited to the rectum and sigmoid colon – colonoscopy if the entire colon is viewed.

Although x-rays and endoscopy procedures are generally kept to a minimum, it is likely they will need to be repeated from time to time to determine success after surgery or, more routinely: • to check on the extent of the inflammation • to see if there are any changes in tissues (e.g., development of pre-cancerous cells) • to determine whether on not a particular treatment strategy is working.

Endoscopy is usually performed under local anaesthetic or sedation.

• red itchy eyes • sores in the mouth • swollen and painful joints • bumps or lesions on the skin (erythema nodosum) • thinning of the bones (osteoporosis) • kidney stones • a type of hepatitis called primary sclerosing cholangitis.

How is ulcerative colitis diagnosed?

Ulcerative colitis is suspected when someone has a history of rectal bleeding (without or without abdominal pain and diarrhoea). To arrive at a definitive diagnosis, medical practitioners need to investigate in order to eliminate other possibilities (e.g., Crohn’s disease, colorectal cancer).

The medical investigation will include: • complete personal medical history, including full review of all symptoms • complete family history • physical examination • examination of stool samples to rule out infectious diseases or check for blood in the stool

How is ulcerative colitis treated?

Medication Ulcerative colitis is treated mainly with various types of medication that can reduce inflammation and give the intestines a chance to heal. Often, the same medications will be used in treat a flare-up and preventing symptoms during remission, but will usually be administered in different dosages and schedules.

Surgery Some people might require surgery to remove all or parts of the colon and/or to treat the complications that might arise with ulcerative colitis. See Section 8 ‘Complications of IBD.’

Nutrition and diet The onset of the ulcerative colitis is not thought to be related to diet, but proper diet and nutrition are very important in the management of the condition.

Treatment strategies for ulcerative colitis are discussed in greater detail in other sections.

• complete blood count (CBC) or full blood count (FBC), which can provide additional clues to one’s overall health.

SECTION 4 Ulcerative Colitis | 23

SECTION 5

CROHN’S DISEASE

What is Crohn’s disease?

Crohn’s disease is a chronic inflammatory condition of the gastrointestinal (GI) tract. It most commonly affects the last segment of the small intestine (ileum) and the first part of the large intestine (caecum), although it can occur in any part of the GI tract from the mouth to the anus and, very occasionally, in areas outside the intestine.

It is not uncommon for people with Crohn’s disease to have patches of normal tissue in between areas of inflammation. This has implications for how Crohn’s disease is treated, especially by surgery.

Also, unlike ulcerative colitis, where the inflammation is limited to the innermost lining of the intestinal wall, Crohn’s disease can affect all layers of the GI tract. This can lead to the development of a number of complications that are quite specific to the Condition. See Section 8 ‘Complications of IBD.’

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How does Crohn’s disease affect the intestines?

Crohn’s disease affects the GI tract, and the intestinal wall becomes inflamed (red and swollen). The inflammation can penetrate through all layers of the GI tract and may occur at one or more locations in the GI tract, from the mouth right through to the anus, with areas of normal tissue between areas of diseased tissue.

Depending on the main areas of the intestine involved in Crohn’s disease, the condition can be referred to as:

disease, especially the children and adolescents who might experience delayed growth or pubertal development as a result. For this reason, a dietitian or nutritionist is an important member of the clinical team, especially for children and young people with Crohn’s disease.

In addition to symptoms related to the GI tract, Crohn’s disease can also cause symptoms in other parts of the body.

These include: • red itchy eyes • sores in the mouth

• I leocolitis: involves the ileum and colon

• swollen and painful joints

• I leitis: involves the ileum only

• bumps or lesions on the skin

•C rohn’s (granulomatous) colitis: involves the colon only

• thinning of the bones (osteoporosis)

•G astroduodenal Crohn’s disease: involves the stomach and duodenum

• kidney stones

• J ejunoileitis: involves the jejunum.

Another common feature of Crohn’s disease is inflammation around the anus. This may take the form of abscesses (sacs filled with fluid, bacteria, and pus), fissures (ulcerated cracks) or fistulae (channels leading from the intestine to other body organs). A narrowing of the intestinal wall can result from the swelling and inflammation during active disease, as well as from the formation of scar tissue (fibrotic strictures) following prolonged inflammation.

These complications are described in more detail in Section 8 ‘Complications of IBD.’

What are the signs and symptoms?

Typical symptoms include: • frequent, watery diarrhoea • sense of urgency to have a bowel movement • crampy abdominal pain • a feeling of ‘blockage’

• (rarely) hepatitis or cirrhosis of the liver.

• fever during active stages of disease

How is Crohn’s disease diagnosed?

• rectal bleeding (if the colon is involved)

Crohn’s disease is suspected in people who have been experiencing symptoms such as abdominal pain, diarrhoea, and weight loss that have lasted for weeks or months.

Because there is no single test that can establish the diagnosis of Crohn’s disease with certainty, and because the disease often mimics other conditions, it could take time and several investigations to arrive at the correct diagnosis.

• loss of appetite • tiredness and fatigue • weight loss.

The signs and symptoms of Crohn’s disease can vary considerably among those who have the condition, depending on the location and severity of the inflammation within the GI tract. For example, if a narrowing (stricture) occurs in the intestinal wall at the site of the inflammation— especially in the upper parts of the GI tract—there could be nausea, vomiting, bloating, and constipation.

Crohn’s disease in the colon can mimic the effects of ulcerative colitis, often making it difficult to differentiate between the two conditions.

People with Crohn’s disease often feel tired and are easily fatigued. Inflammation in the small intestine can impair the digestion and absorption of essential nutrients from food, which adds to the tiredness and fatigue. This is often complicated by the fact that, during active stages of the disease, many people try to avoid eating in order to prevent their symptoms from worsening, perhaps not realising that inadequate intake of food and fluids can cause sudden and severe dehydration and, over time, lead to malnutrition.

This is an important consideration for anyone with Crohn’s

The medical investigation will include: • complete personal medical history, including full review of all symptoms • complete family history • physical examination • examination of stool samples to rule out infectious diseases or check for blood in the stool • complete blood count (CBC) or full blood count (FBC), which can provide additional clues to one’s overall health.

For example, low levels of red blood cells can suggest internal bleeding and the presence of anaemia. A high white blood cell count, a higher-than-normal level of C-reactive protein (CRP), or a high erythrocyte sedimentation rate (ESR) can indicate the presence of inflammation somewhere in the body.

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• internal investigations, including: • taking of barium sulphate suspension, followed by x-rays to show areas of inflammation in the stomach and the small intestine • barium enema (if the disease is suspected lower down the GI tract) followed by x-rays to show areas of inflammation in the colon and rectum • endoscopy, to determine the extent and severity of disease. Depending on the suspected location of the inflammation, there are a number of different endoscopy procedures that will be performed, including: – sigmoidoscopy if examination is limited to the rectum and sigmoid colon

Although x-rays and endoscopy procedures are generally kept to a minimum, it is likely they will need to be repeated from time to time to determine success after surgery or, more routinely: • to check on the extent of the inflammation • to see if there are any changes in tissues (e.g., development of pre-cancerous cells) • to determine whether on not a particular treatment strategy is working.

Endoscopy is usually performed under local anaesthetic or sedation.

– c olonoscopy if the entire colon is viewed – i leocolonoscopy if the colon and distal ileum are viewed – e nteroscopy if the small bowel is viewed – g astroscopy if the stomach and upper duodenum are viewed.

How is Crohn’s disease treated?

The treatment of Crohn’s disease will vary with each individual and will depend on the location and severity of inflammation within the GI tract.

During these procedures, a biopsy (examining a small sample of tissue under a microscope) might be done.

The characteristic pattern of Crohn’s disease under microscopic examination can distinguish it from other diseases of the colon, such as ulcerative colitis or colorectal cancer.

It is important to remember that Crohn’s disease cannot be cured by medication or surgery. Both treatment strategies however can effectively relieve symptoms and give one a better quality of life.

Other types of investigations that are helpful in diagnosing Crohn’s disease are computed tomography (CT) scanning, magnetic resonance imaging (MRI), and ultrasound. All of these investigations give the medical team a look inside the body without the need for invasive procedures such as the insertion of a needle or instrument. Your clinical team will advise you if any of these procedures is right for you.

Several types of medications are available that reduce the inflammation and give the intestines a chance to heal. Often, the same medications will be used in treating flare-ups and preventing symptoms during remission, but will usually be administered in different dosages and schedules. See Section 6 ‘Medications in IBD.’

Medication

Surgery Some people with Crohn’s disease might require surgery to remove diseased portions of the intestine or to treat complications that arose when a medical treatment was ineffective. But even if diseased parts of the intestines are removed, Crohn’s disease can re-appear in other areas. See Section 7 ‘Surgery in IBD.’

Nutrition and diet Proper diet and nutrition play an important role in relieving symptoms of Crohn’s disease, replacing lost nutrients, and preventing unwanted weight loss.

Each of these treatment strategies is discussed in greater detail in Section 9 ‘Diet and nutrition in IBD.’

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SECTION 6

MEDICATIONS IN IBD The main reason why things could go wrong in IBD is the presence of chronic uncontrolled inflammation in the GI tract. Medications are essential in controlling the inflammation.

Medications to control inflammation are the single most important means of treating IBD. By bringing the inflammation under control, medications can relieve the symptoms of IBD and reduce the chances of complications developing. Most importantly, controlling the inflammation gives the GI tract an opportunity to heal.

As there is simply not enough space here to include all the available information about each medication, we will present an overview of the most important and relevant information. You should always consult your clinical team or pharmacist if you have any questions about your medications, or if you’re concerned about possible side effects. Also, be sure to tell your clinical team if you have any known allergies to medications, or if you have experienced any difficulties when taking medications in the past.

At present, the medications used to treat inflammation in IBD belong to five main categories:

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• aminosalicylates • corticosteroids • immunomodulators • biological agents • antibiotics.

Each of these is described in the following pages.

We will also discuss how some non-specific medications are used in managing certain symptoms, treat specific complications, and replace or supplement essential nutrients that are poorly absorbed because of extensive disease or surgery.

General considerations

Aminosalicylates

Several different medications have proved to be effective for the treatment of IBD. The type/s most appropriate for you and the dosage prescribed for you will depend on a number of factors:

What are they?

• the location of inflammation within your GI tract

To be effective, 5-ASA must reach the area of inflammation within the GI tract. But if ‘pure’ 5-ASA is taken by mouth, it is absorbed into the bloodstream in the upper GI tract and cannot reach the inflamed area. For this reason, aminosalicylates are formulated in several different ways to best deliver 5-ASA to the actual site of inflammation.

• the severity of your symptoms • whether the medications are being used to treat a flare-up of disease or to prevent further flare-ups • how well you are able to tolerate certain medications without experiencing undesirable side effects.

Your clinical team will work out a treatment plan based on your own circumstances at a given time. It’s quite common for those with IBD to require a combination of medications to achieve the best result.

It is important to remember the following: • Because IBD is a chronic condition, many people will need to take medications for long periods of time, either to bring the disease under control or to maintain remission once the symptoms have disappeared. It’s important to take your medications exactly as prescribed, even if you’re feeling well. Stopping your medication can result in a flare-up of symptoms or lead to other problems, including a relapse, sometimes even months later. Always consult with your clinical team before stopping any medication.

• Most of the medications used to treat IBD work by suppressing the immune system. Too much suppression however can reduce the ability of your body to defend itself against infection. Always be sure to report any signs of fever, chills, or sore throat to your clinical team as soon as they appear.

• Depending on the medications used to treat your condition, you might need regular blood tests to assess bone marrow function or to detect signs of infection.

You might also need regular tests to monitor the function of your liver and kidneys. These tests are vital to maintaining your long-term health and should never be missed.

• Taking several different medications at the same time also increases the possibility of drug interactions.

Drug interactions can decrease the effectiveness of a medication, intensify its action, or cause unexpected side effects. Be sure to tell your clinical team about any other medications you might be taking, including over-the-counter products and complementary or alternative therapies.

Aminosalicylates are a group of medications that contain the active ingredient 5-aminosalicylic acid (5-ASA). Note: 5-ASA is chemically related to aspirin but is not the same as aspirin.

How do they work?

Aminosalicylates are thought to work topically (i.e., from the inside) by blocking the effects of inflammatory mediators, which are substances produced by the immune system during the process of inflammation.

Who uses them?

Aminosalicylates are used to treat mild to moderate flare-ups of ulcerative colitis and are occasionally used in mild Crohn’s disease. Their main role is to maintain remission and prevent relapse in people with ulcerative colitis.

Which aminosalicylates are used in Australia to treat IBD? Aminosalicylates used to treat IBD in Australia are sulfasalazine, olsalazine, mesalazine and balsalazide. You can choose between oral and rectal formulations, depending on the specific aminosalicylate that’s prescribed for you.

Sulfasalazine Available as: • Salazopyrin® oral tablets • Salazopyrin-EN® oral enteric-coated tablets • P yralin EN® oral enteric-coated tablets.

Sulfasalazine is a ‘pro-drug,’ meaning that it’s not active in its ingested form but is chemically linked to another molecule that prevents it from being absorbed until it reaches the area of the body where it is needed. In sulfasalazine, 5-ASA is attached to the sulphur antibiotic sulphapyridine. The link between these two components is broken only when sulfasalazine reaches the large intestine.

Although very little 5-ASA is absorbed into the bloodstream from the large intestine, almost all of the sulphapyridine is absorbed. This is thought to be responsible for most, if not all, of sulfasalazine‘s side effects. Approximately 10–20% of those with IBD are unable to tolerate sulfasalazine because of its side effects, although these can be managed by starting out with lower doses and gradually building up to an effective dosage.

The most common side effects of sulfasalazine are abdominal pain, nausea, vomiting, and loss of appetite.

These can be reduced by taking the medication with food

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or by using an enteric-coated formulation which helps release the 5-ASA more slowly at the site of inflammation.

Those who are allergic to the sulphapyridine component of sulfasalazine might develop severe inflammation of the liver (hepatitis) or an itchy skin rash (hives), as well as swollen hands and face. These side effects usually occur within about three weeks of first taking the medication. A less common but potentially serious side effect is agranulocytopaenia (bone marrow suppression), which also tends to occur within the first month of starting treatment.

Less common side effects of sulfasalazine include: haemolysis (shortening of the normal 4-month lifespan of red blood cells); reduction in the absorption of folic acid; and reduced sperm count in men (which returns to normal once the medication is discontinued).

Some might also experience headaches, yellowing of the eyes, and orange-coloured urine (which is no cause for alarm).

Olsalazine Available as: Dipentum® oral tablets and capsules.

Like sulfasalazine, olsalazine is a pro-drug that releases 5-ASA only when it reaches the large intestine.

Because the 5-ASA in olsalazine is linked to a molecule other than sulphapyridine, most people who are unable to tolerate sulfasalazine because of its side effects can take olsalazine.

The most common side effect of olsalazine is watery diarrhoea, which tends to develop soon after beginning treatment. This can be lessened by starting with a lower dose and gradually building upwards and/ or by taking olsalazine with food. Some people might need to discontinue olsalazine treatment because of the diarrhoea, although the diarrhoea does tend to resolve over time. Less common side effects include nausea, headache, joint pain, abdominal pain, and skin rash.

Mesalazine Available as: • Pentasa® oral tablets, sachets, rectal enemas, suppositories • Salofalk ® oral tablets, sachets, rectal enemas, foams • Mesasal® oral tablets Mesalazine is available in a number of different formulations: • orally as tablets or as sachets of microgranules that can be dispersed in water before administration • rectally as enemas, foams, and suppositories.

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The various formulations of tablets, sachets of microgranules that can be dispersed in water before administration, enemas, foams, and suppositories are designed to best deliver an effective dosage of 5-ASA to the site of the inflammation, while at the same time limiting its absorption into the bloodstream.

Those who are unable to take sulfasalazine because of its side effects can take mesalazine.

The side effects of mesalazine are relatively uncommon. Nausea, abdominal pain, headaches, and skin rashes are those reported most frequently.

There have also been a few reports of associated kidney damage.

Balsalazide Available as: Colazide® oral capsules.

Balsalazide is a pro-drug that is formulated to release 5-ASA only when it reaches the large intestine.

This mode of delivery results in 99% of the 5-ASA being delivered directly to the colon, allowing for rapid topical treatment of ulcerative colitis with only minimal systemic absorption. Unlike sulfasalazine, the active 5-ASA is attached to an inert carrier molecule, thus avoiding any sulphur-related sensitivity.

Balsalazide is well tolerated with relatively few side effects. The most common side effects include diarrhoea and headache.

Corticosteroids What are they?

Corticosteroids are medications derived from a natural hormone called cortisol, which is produced by the adrenal gland and is essential for a wide range of bodily functions. Corticosteroids should not be confused with steroid sex hormones (e.g., testosterone or oestrogen) or with anabolic steroids used by body-builders and athletes. Corticosteroids are used in treating a wide range of medical conditions and are among the most effective and fast-acting medications available for treating acute IBD flare-ups.

How do they work?

Corticosteroids have a direct anti-inflammatory activity, but also work by suppressing the immune system so that it can no longer mount an inflammatory response. Their action is rapid—which, occasionally, can make some people more susceptible to infection—but is not usually long-lasting. It is also not generally possible to target the action of corticosteroids specifically to the site of inflammation, with the exception of rectally-administered or controlled-release formulations. Many other body systems besides the GI tract react to the presence of corticosteroids, resulting in a wide range of undesirable side effects.

For these reasons, the use of corticosteroids for treating IBD should be limited to the lowest possible dosage for the shortest period of time. Because prolonged use of corticosteroids causes the adrenal glands to either stop producing or to slow down the production of normal internal cortisol, they cannot always be discontinued abruptly.

Most often, the dosage must be gradually tapered over time to allow the adrenal glands to begin producing their own cortisol again.

Who uses them?

Corticosteroids are used in treating acute moderate to severe ulcerative colitis and acute Crohn’s disease. High doses are often given for a short period of time to bring flare-ups of disease under control and to induce remission.

The dosage is then gradually tapered over weeks or occasionally months until the corticosteroids can be discontinued altogether. Some people with persistent ‘grumbling’ disease might need to take corticosteroids for longer periods of time. In these cases, the lowest possible dose is used to keep the disease under control.

The use of corticosteroids as maintenance therapy should be avoided wherever possible, as current research suggests they do not prevent disease flare-ups and, even at low dosages, their long-term use is associated with an increased risk of side effects (see next page).

Combination treatment with immunomodulators (see below) often allows for lower doses of corticosteroids to be used and/or for more a rapid withdrawal of corticosteroids once the inflammation is under control.

Which corticosteroids are used to treat IBD in Australia?

The most common corticosteroids used to treat IBD in Australia are prednisolone, budenoside, and hydrocortisone.

• Prednisolone is available in oral formulations (Predsolone®, Panafcortelone®, Solone®), and rectal formulation (Predsol®).

• Hydrocortisone is available as a rectal foam (Colifoam®).

It is administered intravenously in hospitals for treating flare-ups.

• Budesonide capsules (Entocort ®, Budenofalk ®) are a controlled-release formulation that deliver active ingredient to the distal (farthest end) ileum and proximal (nearest end) colon with fewer systemic side effects. Budenoside is also available as a rectal formulation (Budenofalk ®).

The type of corticosteroid used to treat IBD will depend on the location and severity of the inflammation at a given time.

In acute flare-ups among those with severe and extensive IBD, an intravenous formulation might be needed from time to time to bring the disease under control. For those whose disease is confined to the lower part of the large intestine, formulations that can be administered via the rectum are the preferred option because it limits the absorption of corticosteroid into the bloodstream, producing fewer side effects.

What are the side effects of corticosteroids?

Because corticosteroids affect a number of different body systems, there is a wide range of possible side effects. While it is important to be aware of the side effects of corticosteroids, it is also important to remember that they don’t always occur. The risk of developing side effects depends on the dosage and the length of time that the treatment is administered. In some cases, the side effects of corticosteroids outweigh their anti-inflammatory benefits.

For most, however, side effects are temporary problems that tend to resolve once the dosage is reduced or the treatment discontinued altogether.

Some of the more common side effects of corticosteroids include: • increased appetite • weight gain, mainly in the face and body (sometimes a ‘buffalo hump’ of fat develops in the middle of the upper back) • rounding or ‘mooning’ of the face • skin redness • acne • increased facial hair • stretch marks from rapid changes in weight • thinning of the skin • easy bruising • ankle swelling • weakness and muscle wasting in upper arms and legs • mood swings

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• psychosis and other psychiatric symptoms • increased risk of infection • high blood pressure (hypertension) • high blood sugar levels (hyperglycaemia) • insomnia (difficulty sleeping) • growth retardation in children and adolescents • cataracts • weakened bones (osteoporosis).

The most effective way to reduce the risk of developing side effects—or to manage certain side effects when they do occur—is to quickly but carefully taper initial high doses of corticosteroids downwards to the lowest effective dosage once the inflammation is under control. In some instances, additional medications might be needed for a time to minimise the side effects of corticosteroids (e.g., bone loss).

It is important however to take corticosteroids exactly as prescribed and to never take repeat courses without medical advice and supervision.

Immunomodulators What are they? How do they work?

Immunomodulators are a group of medications that modify the normal function of the immune system.

More specifically, immunomodulators alter the immune system so that it can no longer mount an inflammatory response in the affected areas of the intestine.

Because the process of immune system suppression is slow and gradual, immunomodulators can take up to three months or more to take effect. In general, the immunomodulators used in treating IBD have a corticosteroid sparing effect and are particularly useful in maintaining remission among those with IBD.

Who uses them?

Immunomodulators tend to be used for those with more severe IBD and are more commonly used for Crohn’s disease than for ulcerative colitis. They are usually most appropriate for those who: • have had no response or only a partial response to aminosalicylates or corticosteroids • frequently require corticosteroids or have become dependent on them (i.e., experience disease flare-ups when corticosteroids are withdrawn) • have perianal disease that is not responding to antibiotics • have fistulae • need treatment to maintain remission.

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During flare-ups of disease it is common for an immunomodulator to be combined with a corticosteroid to speed up the response. This often allows for lower doses of corticosteroid to be used or for more rapid withdrawal of corticosteroids once the inflammation is under control, resulting in fewer corticosteroid-related side effects. Combination treatment also helps to induce and maintain remission.

Which immunomodulators are used to treat IBD in Australia?

The immunomodulators currently used to treat IBD in Australia are: • azathioprine (AZA, Imuran®, Azahexal®, Azamun®, Azapin®, Thioprine®) • 6 -mercaptopurine (6-MP, Puri-Nethol®) • c yclosporin (Cicloral®, Neoral®, Sandimmun®) • methotrexate (Methoblastin®, Ledertrexate®) • occasionally, 6-thioguanine (Lanvis®).

Increasingly, allopurinol (e.g. Zyloprim®, which is not an immunomodulator) is used to boost the level of active metabolites of azathioprine or 6-mercaptopurine.

Azathioprine and 6-mercaptopurine Azathioprine and 6-mercaptopurine are both available in tablet formulations and are chemically quite similar; in fact, azathioprine is converted to 6-mercaptopurine in the body. These medications are slow-acting and can take up to three to six months to have an effect.

An uncommon but important side effect that can occur because of the accumulation of azathioprine in the body is bone marrow suppression. This causes a decreased production of blood cells, in particular white blood cells,

which are the body’s main defence against infection.

It can also cause easy bruising. Bone marrow suppression is reversible once the medication is discontinued but it can take several weeks before the production of blood cells normalises.

Other side effects of azathioprine include nausea, vomiting, loss of appetite, and malaise (a general feeling of illness).

These side effects tend to resolve if the dosage is reduced or is divided throughout the day. Some people might also experience allergic reactions such as fever, rashes, joint pain, canker sores in the mouth, and inflammation of the liver (hepatitis) or pancreas (pancreatitis). These usually occur within about three weeks of starting the medication. Approximately 10–20% of individuals are unable to tolerate azathioprine because of its side effects. All of the side effects, however, resolve once the medication is discontinued. Unlike corticosteroids, both azathioprine and 6-mercaptopurine can be discontinued immediately if needed.

Methotrexate Methotrexate works more rapidly than azathioprine or 6-mercaptopurine and is given weekly via tablets or injections.

The most common side effect of methotrexate is nausea, but it can also cause flu-like symptoms (vomiting, headache, fatigue, diarrhoea) and a low white blood cell count. Less common but more serious side effects with long-term use include liver scarring and lung inflammation. Methotrexate can also cause a deficiency of folic acid, which is necessary for blood formation. For this reason, folic acid tablets are often prescribed along with methotrexate. Methotrexate can also lower sperm count among men, but this returns to normal after the medication is discontinued.

Biological agents What are they? How do they work?

Biologicals are a newer category of immunomodulator.

They are made from living organisms and the products of these organisms such as proteins, genes and antibodies.

Biologicals work by blocking the effects of specific substances (inflammatory mediators) that are produced by the immune system during the process of inflammation. An inflammatory mediator known to promote ongoing inflammation in people with Crohn’s disease and ulcerative colitis is tumour necrosis factor alpha (TNF-). The biological agents used to treat IBD have a selective action in terms of blocking the effects of this particular substance and are sometimes referred to as anti-TNF agents. Similar to corticosteroids, the anti-TNF agents have a rapid onset of action.

Who uses them?

Biological agents are used mainly to treat those with moderate to severe Crohn’s disease and ulcerative colitis, and whose condition cannot be controlled by other types of medications.

Which biologicals are used to treat IBD in Australia?

Infliximab (Remicade®) is currently approved in Australia to treat Crohn’s disease and ulcerative colitis, while adalimumab (Humira®) is approved for use in Crohn’s disease only.

Vedolizumab is also available for Crohn’s disease.

Strict eligibility criteria apply for all agents.

Infliximab is a chimeric monoclonal antibody, meaning that it is a hybrid consisting of a protein sequence that is 75% human and 25% mouse. It is given as an intravenous infusion every 8 weeks.

Adalimumab is a fully-human monoclonal antibody that can be self-administered every fortnight by the patient via subcutaneous injection into the fat layer under the skin.

The most common side effects of anti-TNF agents are reactions at the site of infusion or injection. These can appear as redness, swelling, itching, bruising, or rash. Other side effects include upper respiratory tract infections, headaches, generalised rashes, and nausea.

Serious infections, including sepsis and tuberculosis (TB), have been reported in patients receiving anti-TNF agents.

Many of these serious infections however occurred in patients also taking immunosuppressive therapy (i.e., immunomodulators) which, along with the disease, can predispose a person to infection. The risk of infection is likely to be related to the total ‘burden’ of immunomodulatory treatment at a given time, rather than to a specific effect of anti-TNF agents.

Reports of TB involving anti-TNF agents usually involve a reactivation of infection among those who have inactive TB (i.e., those who have been exposed to TB but have not shown any signs or symptoms of the infection). For this reason, all patients starting treatment with infliximab or adalimumab need to undergo TB screening using a TB skin test or blood test (QuantiFERON Gold®), and a chest x-ray. The screening helps determine previous exposure to TB.

Antibiotics What are they? How do they work?

Even though no specific infectious agent such as a bacterium or virus has ever been found to be the cause of IBD, antibiotics are sometimes useful as a primary treatment approach, especially among those with Crohn’s disease. It is thought that antibiotics help control symptoms in this situation by reducing the level of bacteria found in diseased intestinal tissue.

Who uses them?

Antibiotics are used mainly for those with Crohn’s disease, especially to treat fistulae (abnormal channels between two loops of intestine or between the intestine and other organs such as skin, vagina, or kidneys), or recurrent abscesses (pockets of pus) that occur near the anus.

Antibiotics are generally not useful for those with ulcerative colitis, with the exception being those who develop toxic megacolon (distended abdomen and an extremely inflated colon). Toxic megacolon is a life-threatening condition that places a person at a high risk for perforation of the large intestine.

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Which antibiotics are used to treat IBD in Australia?

Metronidazole Metronidazole (Flagyl®) is a broad-spectrum antibiotic that, by definition, is useful against a wide range of bacteria. It is used most commonly to treat complications such as fistulae and abscesses in the anal region among those with Crohn’s disease.

Metronidazole has also yielded benefits in the treatment of Crohn’s disease at other sites, particularly the large bowel. It is also useful for the treatment of pouchitis, which can occur following restorative proctocolectomy (otherwise known as ileal pouch-anal anastomosis surgery).

The most common side effects of metronidazole are nausea, vomiting, loss of appetite, diarrhoea, a metallic taste in the mouth, dizziness, headache, and dark or reddish-brown discolouration of the urine. Long-term treatment with metronidazole (i.e., more than eight weeks) is not recommended as it can cause damage to nerves in the feet and arms, leading to a tingling sensation and numbness. Some people taking metronidazole might experience an unpleasant reaction to alcohol (e.g., flushing of the face, headaches, palpitations, nausea, shortness of breath, drowsiness).

Ciprofloxacin Ciprofloxacin (Ciproxin®, Cifran®, Ciprol®), like metronidazole, is a broad-spectrum antibiotic used in treating complications arising from Crohn’s disease, such as abscesses and fistulae in the anal region, and in the management of pouchitis.

Ciprofloxacin is a well-tolerated medication with the most common side effects being nausea, diarrhoea, elevated liver enzymes, vomiting, and rash.

Tendonitis (predominantly the Achilles tendon) can be seen with long-term use of ciprofloxacin. Ongoing use should therefore be avoided if possible.

Non-specific medications for IBD Anti-diarrhoeal medications Medications used to control diarrhoea include loperamide (Imodium®), diphenoxylate and atropine (Lomotil®) and codeine phosphate. These work mainly by reducing muscle contractions in the intestinal wall and thereby slowing down the movement of faecal waste through the intestine. To some extent, anti-diarrhoeal medications also reduce the amount of fluid produced by the lining of the intestine, but have no direct effect on the inflammation itself.

Anti-diarrhoeal agents should not be used in children nor should they be used during a severe flare-up of disease as they can cause the bowel to enlarge and burst. In general, anti-diarrhoeal medications should be used with extreme caution as they do not

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treat the underlying cause of IBD and are a major cause of toxic megacolon. Their best use is for controlling diarrhoea during milder attacks of disease, or in helping those experiencing diarrhoea even though their disease is inactive.

The main side effect of anti-diarrhoeal agents is constipation. Codeine phosphate can also cause drowsiness, headache, mood changes, and skin rashes.

Lomotil® contains atropine, which can cause dry mouth, blurred vision, palpitations, and difficulty passing urine, but these generally occur only when large amounts are taken.

Bile salt binders Bile salts are a normal component of bile, which is produced in the liver, stored in the gallbladder, and secreted into the small intestine to aid in the digestion and absorption of food. Normally, bile salts are reabsorbed in the lower part of the small intestine, the terminal ileum. If, however, the terminal ileum is damaged because of extensive Crohn’s disease or, more commonly, as a result of ileal surgery, bile salts can pass into the large intestine and irritate the inner lining, causing diarrhoea.

Cholestyramine (Questran®) and colestipol (Colestid®) are medications that bind to bile salts and prevent them from causing diarrhoea. Both are formulated as powders that need to be dissolved in liquid before swallowing.

The most frequent side effects of bile salt binders are constipation, abdominal discomfort, and abdominal distension (bloating). Heartburn, nausea, and loss of appetite can also occur. The medications can also interfere with the absorption of other medications and of food, which worsens the diarrhoea. In addition, many find their taste unpleasant.

Analgesics (pain killers) Pain with IBD most commonly occurs during a flare-ups, and is best treated by controlling the inflammation with the use of medications as described above.

For short-term relief of pain only, mild analgesics such as paracetamol (Panadol®) or a combination of paracetamol and codeine (e.g., Panadeine® and Panadeine Forte®) can be used from time to time, as needed. Aspirin and non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Nurofen®, Brufen®, etc.) should generally be avoided as they can cause bleeding and damage to the lining of the stomach and can exacerbate a flare-up.

Anyone with severe or persistent pain is advised to discuss the symptoms with their clinical team as this might signal the development of a complication that requires specific treatment.

Vitamins and minerals Provided that those with IBD are able to maintain a wellbalanced diet that includes items from all major food groups, vitamin and mineral supplements are not usually required, particularly when the disease is inactive. There are however a few exceptions.

• Those who have extensive Crohn’s disease of the terminal ileum or have had a significant length of terminal ileum removed by surgery might require regular injections of vitamin B12, which is essential for blood formation and for nerve and brain function.

• Some patients will require folic acid supplements (especially women who are pregnant or are planning to fall pregnant).

• Some will require iron supplements if there has been significant bleeding in the small or large intestine. Iron supplements can cause one’s stool to turn black. It can also cause indigestion and nausea.

• Those with extensive Crohn’s disease absorb fat poorly, particularly if they’re taking bile salt binders, and might need supplements of the fat-soluble vitamins A, D, or K. For more information on this topic, refer to Section 9 ‘Diet and nutrition in IBD.’

Alternative or complementary therapies Over time, many individuals with chronic conditions grow tired of their disease and its treatment, and look for solutions outside conventional medicine. Some types of alternative therapies, such as relaxation techniques, yoga and meditation, can be helpful.

On the other hand, other alternative solutions such as restrictive diets or homeopathic products in place of usual medications can be detrimental to overall health in both the short and longer term. To ensure that your health and wellbeing are not being compromised in any way, you should discuss these options with your clinical team before you try them.

Medications and pregnancy If you are pregnant or wish to fall pregnant, it is only natural to be concerned about the possible effects on the foetus of the various medications used to treat your IBD. Generally speaking, it is best to take as few medications as possible during pregnancy, but it is also important to realise that uncontrolled disease often poses a greater threat to a developing child than the drugs used to treat the condition.

Several of the medications used to treat IBD—for example, azathioprine, 6-mercaptopurine, aminosalicylates, and bile salt binders—have been proved over time to not cause harm to a developing baby. Formulations of medications that deliver active ingredients directly to the site of inflammation, and therefore only minimally absorbed into the bloodstream, can also be used where appropriate.

More information about the use of medications in pregnancy is available in the section Fertility, Pregnancy and IBD. As always, you should discuss any concerns you might have about your medications with your clinical team or pharmacist, who are in the best position to advise you about the relative safety of your medications in your particular circumstances.

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SECTION 7

SURGERY IN IBD In this section we will present the most common surgical procedures for Crohn’s disease and ulcerative colitis. Assuming that it’s not an emergency situation, the decision on the procedure that is right for you will be made by you and your clinical team, based on factors such as the extent and severity of your disease as well as your age, lifestyle, and general health.

Surgery in IBD It’s possible that you’ll need to face the prospect of surgery at some point during the course of your IBD. Approximately 10% of those with ulcerative colitis and 30–50% of people with Crohn’s disease will eventually require surgery.

A recommendation by your clinical team to consider surgery is never made lightly. When treating IBD, the top priority is always to preserve the bowel for as long as possible. Sometimes this just isn’t possible: the disease might be too extensive or severe, and might no longer be responding to medications used to control the inflammation. It is important to understand that surgery for IBD is not simply a last resort that is considered when all else has failed, but a very useful treatment option in some cases. Surgery can offer long-term relief of symptoms and reduce or even eliminate the need for ongoing medication, often vastly improving quality of life.

When I woke up from the anaesthetic and saw my stoma for the first time, I though it was the most adorable thing I had ever seen. Instantly I gave it a name: Spongebob.

Occasionally, surgery is required to treat a severe complication such as perforation (rupture) of the bowel or significant rectal bleeding. These are considered to be emergency situations and the decision to have surgery will need to be made quickly with few, if any, other options.

In most cases, however, surgery is pre-planned (elective). This means that you can make an informed

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decision on whether to proceed with surgery or not, after discussing all possible options with your gastroenterologist and surgeon. You will also be able to consider the reasons why a particular procedure is recommended, and learn what to expect before, during, and after surgery. As surgery in IBD sometimes means either a temporary or permanent colostomy or ileostomy, you will also have the opportunity to meet the stoma nurses before making a decision.

It’s also a good idea to speak to others who’ve already undergone similar procedures so that you can gain a true perspective of life before and after surgery.

People naturally have fears about surgery and its consequences but once they’ve had an operation, many wish they hadn’t delayed the procedure, as it would have saved them months or even years of needlessly enduring symptoms.

Surgery for Crohn’s disease Approximately 30–50% of those with Crohn’s disease will need to undergo surgery at some time in their lives. Surgery is not a cure for Crohn’s disease but it can relieve symptoms and greatly improve quality of life.

The most common reasons for surgery in Crohn’s disease are: • t o manage complications such as stricturing (bowel narrowing), perforation, or abscesses. These can occur suddenly and require an emergency operation • t o manage disease that does not respond or has stopped responding to medical treatments • t o eliminate the side effects of certain medications • t o address delayed growth and pubertal development among children and adolescents.

The location and severity of the disease in the gastrointestinal tract and/or the type of complication that arises will determine the type of surgical procedure that can be performed.

Because the inflammation in Crohn’s disease can re-appear in previously healthy parts of the intestine after surgery, surgeons try to conserve as much of the bowel as possible.

Their aim is to treat a complication or solve a specific problem while trying to preserve as much of the intestine as possible.

Surgery for Crohn’s disease can either be performed by laparoscopic (keyhole) or open surgery. Your surgeon might recommend the laparoscopic approach as this reduces post-operative pain, complications, and recovery time.

Laparoscopic surgery however is often not suitable for emergency or re-do operations, which are usually best done as open surgery.

Surgery for abscesses and fistulae Abscesses and fistulae are complications that can occur when the inflammation of Crohn’s disease penetrates outside the intestinal wall. An abscess is a localised collection of infection (pus). A fistula is an abnormal connection from an area of diseased bowel to another organ.

For example, a fistula can connect the small bowel to the skin (entero-cutaneous fistula).

In some cases, abscesses can burst and drain into the abdominal cavity, causing peritonitis (severe pain), fever, and septicaemia (bacteria in the bloodstream). This is considered to be a surgical emergency and the abdomen must be opened so that it can be washed out, the abscess drained and, if necessary, affected parts of the bowel removed (resected).

Antibiotics are often used in addition to surgery to treat infection associated with abscesses.

Resection and anastomosis In Crohn’s disease, the initial treatment is usually medical to try and control the disease and preserve the bowel, but with a severely diseased bowel, surgical removal might be the best option. Surgery might also be required for strictures that are causing bowel obstruction, fistulae, or perforation, or for disease that does not respond to medical treatments.

The surgical procedure involves removing the diseased section of intestine (resection) and joining together the two ends of healthy intestine (anastomosis). The resection commonly involves the last part of the small bowel and the first part of the colon (ileo-colic resection), or the just the small bowel or part of the colon.

Sometimes after emergency surgery, often following a perforation with severe infection, the surgeon might conclude that an anastamosis is not healing well. In this case, he or she might opt to form a stoma (colostomy or ileostomy). This is where the bowel is brought to the skin surface and a bag or appliance is worn to collect the bowel motions. Such bags are often temporary and the bowel can be reconnected at a later operation.

Surgeons will form a stoma only if absolutely necessary, and will discuss this with you prior to any surgery.

Surgery for strictures A stricture is a narrowing of the bowel which is either caused by inflammation of the bowel or by scarring following this inflammation. Inflammatory strictures can often be treated with medical treatments, but symptomatic strictures caused by scarring usually need treatment by endoscopic dilatation (stretching), surgical resection, or widening.

Abscesses develop most frequently in the anus or less commonly in the abdomen or pelvis. Depending on their location, some abscesses can be drained by inserting a needle through the skin directly into the abscess (percutaneous needle drainage), using a CT or ultrasound scan for guidance.

Stricturoplasty is a procedure used to widen a narrowed area in the intestinal wall that is causing obstruction or blockage, but without removing any part of the intestine.

Several stricturoplasties can be done in a single operation if there are several narrow areas, or combined with another procedure, such as a resection.

Abscesses adjacent to the anus (perianal abscess) often require a minor surgical procedure to drain the pus.

An anal fistula is often associated with the abscess and your surgeon will assess this at the time of your surgery and might insert a drain (seton) through the fistula to prevent further abscess formation.

Colectomy and proctocolectomy Although the small bowel is the site most commonly affected

by Crohn’s disease, the disease might also be affecting the colon. In this case, if the disease cannot be controlled with medical management, surgical resection of the colon might be necessary.

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The operation for Crohn’s disease depends on the extent of the disease and can involve removal of a segment of the bowel (segmental colectomy) if the disease is localised. If the entire colon is affected but the rectum is normal, removal of the entire colon (total colectomy) might be necessary. In this case, an anastamosis between the small bowel and rectum can be formed to avoid a stoma. If the rectum is affected in addition to the colon, it might be necessary to remove both colon and rectum (proctocolectomy), which would involve forming a permanent ileostomy.

Implications of having an ileostomy Immediately after surgery, the stoma will be red and swollen but this will subside within a few weeks.

You’ll need to use a skin barrier, a doughnut-like wafer designed to fit snugly around the stoma and protect the skin from any irritation caused by drainage of the faeces.

It normally takes a few days before any drainage begins to accumulate in the bag. There is an initial learning curve to adjusting to an ostomy; during this time, specialty nurses and/or stomal therapists are available to provide support both in hospital and at home.

No one ever needs to know you have an ostomy unless you tell them. Normal clothing can be worn with only minimal adjustments, and odour isn’t a problem. Changing a bag soon becomes a simple and discreet process.

Recurrence of disease after surgery Unfortunately, up to 50% of adult patients with Crohn’s disease will experience a recurrence of active disease within five years of having had a resection.

This most commonly occurs at or near the site of the anastomosis. Recent evidence from a clinical trial has shown that a colonoscopy to assess for early recurrence of Crohn’s disease helps plan medical treatment and can reduce the need for further surgery.

Unfortunately, recurrent symptoms require surgery in up to 25% of cases.

Surgery for ulcerative colitis About 10% of those with ulcerative colitis will eventually require surgery. This usually involves removal of the colon and the rectum.

The most common reasons for surgery in ulcerative colitis are: • to manage complications (e.g., acute severe colitis, colon cancer) • to manage disease that does not respond or has stopped responding to medical treatments • to eliminate the side effects of certain medications • to reduce the risk of colorectal cancer among those with pre-cancerous changes in colon tissue.

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Because ulcerative colitis only affects the colon, surgical removal of the colon is regarded as a cure.

Following the removal of the colon and rectum, the surgeon can form an ileostomy or form a reservoir (pouch) from the small bowel to avoid the need for a permanent stoma.

Emergency surgery for ulcerative colitis Sometimes a severe attack of ulcerative colitis will require admission to hospital for medical treatment.

Unfortunately, medical treatment does not always control the disease and emergency surgery might be necessary. If you are admitted to hospital, your gastroenterologist will ask a surgeon to discuss surgical options with you, if it is required.

In uncontrolled acute colitis, the colon can become very thin and distended, which leads to the bowel perforating or bursting. If your clinical team thinks this is a possibility, they will recommend surgery, as perforation leads to peritonitis and severe infection (sepsis). Emergency surgery involves removal of the entire colon with formation of an ileostomy. This is usually done via the open surgical approach.

Elective surgery for ulcerative colitis Your gastroenterologist might recommend surgery even if your condition is less severe if it is not adequately controlled by medications, or if there is significant risk of developing colon cancer. The two surgical options both involve removal of the colon and rectum, either with formation of a permanent ileostomy or an ileal pouch.

Proctocolectomy and ileostomy The traditional surgical procedure for ulcerative colitis is proctocolectomy (removal of the colon, rectum, and anus) with formation of an ileostomy. This procedure is often done by laparoscopic surgery to improve recovery. Although this operation requires a permanent stoma, it is possible to live a completely normal life afterwards. This also avoids some of the potential problems with a pouch.

Restorative proctocolectomy or ileoanal pouch For those who wish to avoid a permanent stoma, the surgeon can form a pouch from the last part of the small bowel ileum. In the two-stage approach, a pouch can be formed during the first operation, or after an emergency colectomy in the three-stage approach.

To form a pouch, the surgeon removes the colon and rectum, but preserves the anus and anal sphincter muscles. The surgeon then uses about 30 to 40 cm of the ileum (the end of the small intestine) to create a J-shaped pouch, which is then brought down and connected directly to the anus. The pouch is a reservoir that stores bowel contents prior to normal defecation.

Since the pouch is formed from the small bowel, the bowel contents are quite liquid, but most patients have full control.

And because this operation requires several bowel joins (anastamoses), a temporary ileostomy is formed to rest the pouch and allow bowel healing. This join is subsequently checked with a special x-ray prior to a further operation that will rejoin the bowel and thus allow normal bowel function.

Restorative proctocolectomy is a good option for many people with ulcerative colitis but it doesn’t suit everyone.

After surgery, many experience frequent loose bowel movements during the day, plus some during the night.

A small amount of leakage can also occur. Over time, however, the number of bowel movements decreases.

After about six to 12 months, most people will have an average of about six semi-formed bowel movements during the day and another at night. Although this is the average, there is wide variation in the frequency of bowel motions.

Although many do well after restorative proctocolectomy, there’s a chance that complications will arise:

In a small proportion of patients undergoing ileoanal pouch surgery, these complications can lead to such poor function that the patient cannot lead a normal life. In such circumstances, the surgeon might need to form a permanent ileostomy with or without removal of the pouch. The rate of pouch failure is approximately 10% at 10 years after surgery.

Which is the best option for me?

In the event that surgery is required to manage your ulcerative colitis, the decision to have proctocolectomy with ileostomy or restorative proctocolectomy is highly personal and will depend on your age, lifestyle, and general health.

For example, some people might have a strong wish to avoid an ileostomy and are prepared to put up with frequent bowel movements and the risks associated with a pouch. On the other hand, some do not wish to have further major surgery with its associated risks and will go for a permanent ileostomy. Your IBD team will discuss all of the options with you and allow plenty of time for decision-making.

• About 5% of those who undergo restorative proctocolectomy develop infection at the site where the ileum is attached to the anus. This can cause abscesses and/or a narrowing (stricture) of the anastamosis.

• Pouchitis (inflammation of the pouch) is similar to ulcerative colitis in the pouch and occurs in about 30% of patients after surgery. Symptoms include increased frequency of stools with urgency, crampy abdominal pain or bloating and occasionally bleeding. Pouchitis is usually treated with antibiotics and its symptoms can usually be improved.

• Although less common, bowel obstruction can occur because of adhesions or scar tissue forming after surgery.

Symptoms include crampy abdominal pain with nausea and vomiting. In most patients, bowel obstruction can be managed with bowel rest (not eating for a few days) and intravenous fluids. Others might need additional surgery to remove the blockage.

• An abnormal connection between the pouch and the vagina (pouch-vaginal fistula) occurs in up to 10% of women. This can occur before or after closure of ileostomy.

It is a common cause of early pouch failure and might require its removal.

• Women who have undergone restorative proctocolectomy might experience difficulties in falling pregnant.

Most surgeons of pregnant women with ulcerative colitis will recommend a caesarean section for delivery.

Women wishing to have children should discuss these issues with their gastroenterologist and fertility specialist before making a decision to undergo surgery.

• There’s a small chance that men who have had restorative proctocolectomy might have difficulties achieving or sustaining an erection as a direct result of the surgery.

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SECTION 8

COMPLICATIONS OF IBD This section provides an overview of the main types of complications associated with IBD and the various body systems involved. It’s intended to help you recognise a complication should it ever arise, and act early by bringing it to the attention of your clinical team.

What is meant by the term ‘complications’?

Complication is defined as ‘an event that makes a simple matter more complex.’ In the case of issues relating to health, a complication is defined as ‘a disease that arises as a consequence of another.’

If these definitions are applied to IBD, they can best be explained as follows: In IBD, the main underlying problem is inflammation in parts of the GI tract. Appropriate treatment of the inflammation leads to improvement; the signs and symptoms of IBD might lessen or disappear altogether, and the person feels better. That is uncomplicated disease. In some cases, however, there might be a delay in improvement or no improvement at all with treatment, or the disease might advance despite treatment, or there might be signs and symptoms of disease outside the GI tract. That is known as complicated disease.

In general, the complications of IBD can be divided into two main categories: • those that involve the intestine, sometimes called local or intra-intestinal complications • those that involve parts of the body outside the intestine or the person as a whole, referred to as extra-intestinal or systemic complications, respectively.

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How do I know if I have a complication?

Several of the complications of IBD are internal, often making it difficult for a person to know that something is brewing until something goes wrong. Many of the possible complications are already well known by surgeons through years of experience in treating the condition. This knowledge is complemented by certain investigations that can identify internal abnormalities before they become more serious.

Blood and urine tests, bone density scans, etc. all provide vital clues as to what’s going on inside the body.

Complications such as skin and eye disorders, or even symptoms of arthritis, can be easy for you to notice yourself should they ever develop.

The key is to act early. If you think something feels not quite right or different from normal, you should discuss your concerns with your clinical team as soon as possible.

Early recognition and prompt treatment of complications can lead to better outcomes.

What are extra-intestinal manifestations?

Although the main site of inflammation in IBD is in the GI tract, the disease can also cause symptoms to appear in other parts of the body. The reasons for these extra-intestinal manifestations are not known, but are thought to relate to a sort of generalised abnormal response of the immune system—in other words, one that is not contained solely within the GI tract. Extra-intestinal manifestations can also be a side effect of medications used to treat IBD and, particularly in Crohn’s disease, can arise because of malabsorption from the small intestine.

The development of arthritis among those with IBD can be a sort of chicken-and-egg situation. Is the problem connected with the intestinal condition or is it a separate condition altogether? This is not always easy to tell, especially among those who might have severe joint inflammation and only mild or even no GI symptoms. In most instances though, the presence of diarrhoea or other symptoms of IBD provides important clues towards identifying the cause of the joint problem. Also, the joint inflammation in those with IBD tends to be less severe, with fewer destructive changes in the joints, than in those who have arthritis as their primary condition.

Bone loss A lower-than-average bone density is seen in anywhere from 30–60% of those with IBD. The most likely causes of bone loss are long-term use of corticosteroids, inflammation during periods of active disease and, to a lesser extent, vitamin D deficiency (especially among those with Crohn’s disease in the small intestine or those who’ve had part of their small intestine surgically removed).

The bone loss can take the form of osteoporosis (porous bones), osteopaenia (low bone density) or osteomalacia (softening of the bones). Over time, the bones become weakened and might eventually break, most often in the spine and hips. In patients with the risk factors above, especially the long-standing use of corticosteroids, regular bone-mineral density scans are recommended and performed to monitor bone loss.

Eye disorders

The types of extra-intestinal manifestations associated with IBD include:

About 10% of those with IBD might experience eye problems. Most of these will not lead to loss of vision if treated early.

• arthritis

The usual types of eye disorders that can occur are:

• bone loss

• uveitis—painful inflammation of the uvea, the middle layer of the eye wall

• eye disorders • kidney disorders • liver disease • skin disorders.

Arthritis Inflammation in the joints (arthritis) is the most common extra-intestinal complication of IBD, affecting approximately 25% of those with Crohn’s disease or ulcerative colitis.

Arthritis can occur as: •p eripheral arthritis which affects the joints in the arms and legs including the elbows, wrists, knees and ankles • axial arthritis which affects the lower spine and sacroiliac joints near the base of the spine • (rarely) ankylosing spondylitis which is a type of axial arthritis that can also cause inflammation in the eyes, lungs and heart valves.

• keratopathy—white deposits at the edge of the cornea • episcleritis—inflammation of the outer coating of the white of the eye • (very rarely) dry eyes—inflammation of the retina or optic nerve.

Kidney disorders Kidney disorders occur more often in those with Crohn’s disease than in those with ulcerative colitis. This is because of the usual location of Crohn’s disease in the small intestine and its potential effects on the absorption of nutrients.

Kidney stones are the most common type of kidney disorder, especially in people who are prone to dehydration.

Less common kidney disorders include: • hydronephrosis—obstruction of a ureter which connects the kidney to the bladder • amyloidosis—deposits of the protein amyloid in the kidneys

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• glomerulonephritis—inflammation of the small blood vessels (glomeruli) in the kidney.

Some medications used to treat IBD (e.g., cyclosporin and, more rarely, compounds containing 5-ASA) can also produce direct effects on the kidney, although these are usually resolved once the drug is discontinued.

Liver disease Because the liver and biliary system (gallbladder and pancreas) are so closely connected with the intestine in terms of the breakdown and absorption of food, complications of IBD can also occur in these organs.

The liver can become inflamed during periods of active disease, although this usually resolves if the IBD is treated effectively. A significant complication is primary sclerosing cholangitis (PSC), which is the medical term used to describe severe inflammation and scarring in the bile ducts. PSC impairs the transport of bile and waste from the liver to the small intestine for eventual excretion in the faeces and can lead to serious liver damage. This complication is more common in ulcerative colitis than in Crohn’s disease.

Some might develop gallstones, which occur when the liquid bile stored in the gallbladder hardens into stone-like pieces. These can block the mouth of the gallbladder where it joins the bile duct.

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This complication occurs more commonly in Crohn’s disease of the ileum (the last segment of the small intestine) as this is where bile salts are absorbed.

Another complication in this body system is pancreatitis, which is the inflammation of the pancreas.

This can occur when a gallstone blocks the bile duct in the area where it joins the pancreas. It can also occur as a side effect of thiopurines (e.g., azathioprine, 6-mercaptopurine) used to treat IBD.

Skin disorders Another relatively common type of extra-intestinal manifestation of IBD is skin disorders. In some instances, these can result from medications used to treat the condition. For example, a reaction to sulfasalazine can cause an allergic-type skin rash, and long-term use of corticosteroids can cause thinning of the skin, facial puffiness (moon face), or acne.

The most common skin disorders associated with IBD are: • erythema nodosum—tender red bumps that occur on the shins, ankles, and arms • pyoderma gangrenosum—deep ulcers oozing pus that occur on the shins, ankles, and arms • aphthous stomatitis—canker sores in the mouth.

How are extra-intestinal manifestations treated?

emotionally to cope with all of the issues and will need additional support from family, friends, and their clinical team.

There is no single answer to describe how extra-intestinal manifestations of IBD are treated. Treatment depends on the type, location, and severity of the complication. For example, eye drops can be used to treat eye inflammations, specific medications might be needed to improve bone strength, surgery might be required to remove gallstones, etc.

It is important to note, however, that most extra-intestinal manifestations of IBD respond to treatment that is aimed directly at reducing the primary inflammation of IBD.

Does IBD cause cancer?

What is meant by ‘systemic complications’?

Systemic complications refer to problems that affect the whole body rather than just the GI tract. The most common systemic complication of IBD is fever, which is the body’s reaction to the presence of inflammation. Any sudden or severe bleeding can cause a rapid heartbeat, drop in blood pressure, and other responses of the circulatory system as it attempts to correct the blood loss. Significant loss of blood over time can lead to anaemia, or a drop in the number of oxygen-carrying red blood cells; this causes feelings of general tiredness and fatigue. Quite often, those with IBD lose their appetite or avoid eating, so as not to make their symptoms worse. This too can cause overall tiredness and fatigue and, over time, can lead to concerning weight loss and malnutrition.

Are there complications of IBD specific to children and adolescents?

The presence of IBD in children and adolescents raises a new set of issues that might be related to the condition itself or to its treatment. In children with Crohn’s disease in particular, a lack of adequate nutrition because of poor absorption of essential nutrients from food and/or prolonged treatment with high doses of corticosteroids can lead to delays in growth and the onset of puberty. Identifying which of these causes is mainly responsible for any delayed growth and pubertal development in a younger person with IBD is extremely important, as treatment can often be adjusted to correct any nutritional deficiencies and restore normal growth patterns.

Another issue specific to children and adolescents is that, while the extra-intestinal or systemic manifestations of IBD might be the same as those in adults, for unknown reasons they seem to predominate and even overshadow the intestinal symptoms. This can sometimes make diagnosis more difficult. It also highlights the importance of keeping a close watch on youngsters who are failing to grow or thrive, who frequently feel sick, have fever, and complain of general malaise and weakness, as these may be systemic manifestations of IBD. Moreover, having a serious chronic illness such as IBD and having to deal with disturbing symptoms such as diarrhoea, bleeding, pain, fever, etc. can most definitely affect anyone with the condition, people are generally less equipped

Among those with long-standing ulcerative colitis (greater than 10 years’ duration) that involves most or all of the colon, the risk of developing colorectal cancer is higher (5–8%) than in the normal population (6%). This is particularly true for those who have developed primary sclerosing cholangitis or have not had regular treatment for their IBD. Regular screening with colonoscopy is therefore indicated for ulcerative colitis has affected most or all of their colon for more than 10 years. The overall risk of developing colorectal cancer is still relatively low, however, and those at a higher risk can often be identified (e.g., by examination of biopsy samples taken from the colon during colonoscopy). If the risk of cancer is considered high, surgical removal of the colon might be recommended.

Colorectal cancer is very rare among those with Crohn’s disease, although the risk might be a little higher if the colon is involved.

Specific complications of ulcerative colitis The majority of those with ulcerative colitis (80–90%) respond well to treatment and never develop any complications. For some, having a complication might simply mean failing to respond in the expected manner to usual medical treatment. Other complications of ulcerative colitis can be more serious and might arise very suddenly, often needing immediate treatment. These include profuse bleeding from deep ulcers in the colon, perforation (rupture) of the colon, and a condition known as toxic megacolon.

Perforation (rupture) of the colon is a potentially life-threatening complication that can occur when the wall of the intestine becomes weakened because of chronic inflammation and ulceration. A hole might develop in the intestinal wall, allowing the contents, which contain a large number of bacteria, to spill out into the abdomen and cause a serious infection known as peritonitis.

In severe ulcerative colitis, the inflammation can eventually penetrate deeper into the layers of the intestinal wall, causing the colon to become very dilated (widened) and swollen. This complication is called fulminant colitis.

Initially, a condition called ileus develops where the normal contractions of the intestinal wall stop temporarily and the abdomen becomes distended (bloated). As the condition progresses, the colon gradually loses its muscle tone and begins to expand because of huge amounts of gas trapped inside the paralysed sections of intestine.

Although rare, toxic megacolon is an extreme form of fulminant colitis and is a medical emergency.

Toxic megacolon occurs when the dilated colon has virtually lost all its ability to contract properly and move intestinal gas along. Severe abdominal distension results and the person

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can become suddenly very unwell, with a high white blood cell count, high fever, and pain and tenderness in the abdomen. Immediate medical attention is required to restore any lost fluid, salts, and blood as well as to decompress the colon in order to prevent rupture. A nasogastric tube might be used to suction out excess air. Surgery might be required if no improvement is noted within 24 hours. If the intestine ruptures, the risk of death is high. With prompt treatment, however, such deaths are rare.

This condition occurs more often in those who have been treated with anti-spasmodic medications, anti-diarrhoeal or narcotic medications, or those who have required prolonged use of corticosteroids. It also occurs more often in the elderly or malnourished.

Specific complications of Crohn’s disease Because Crohn’s disease can affect any part of the GI tract and because, as a rule, it affects the entire thickness of the intestinal wall within a diseased section, a number of complications can arise that are specific to the condition: • intestinal obstruction • abscesses and skin tags • fistulae • fissures • malabsorption and malnutrition.

Intestinal obstruction (strictures) The most common complication of Crohn’s disease is obstruction or blockage of the intestine. This occurs when swelling from inflammation and/or scar tissue cause the intestinal wall to thicken, leading to a narrowing of the intestinal passageway. These narrowed areas are called strictures. Symptoms of intestinal obstruction include crampy pain in the abdomen, often accompanied by vomiting and bloating.

Medications can relieve the obstruction by reducing the local area of inflammation, but it is preferable that medications are used properly in the first place to prevent this complication from arising. Surgery might be needed if the obstruction is severe, does not respond to medical treatment, or recurs frequently.

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Abscesses and skin tags Abscesses, akin to boils, are localised sacs containing intestinal fluid, bacteria, and pus. They can develop in the intestinal wall, in the abdominal cavity, or on the skin around the anus. Symptoms include swelling, tenderness, pain, and fever. Visible abscesses can be lanced and drained. Antibiotics are usually given to clear up any remaining infection.

Skin tags are swollen lumps or flaps of thickened skin that can occur just outside the anus. Faeces can stick to these tags, causing skin irritation. Good hygiene can help reduce any irritation.

Fissures Fissures are ulcerated tears or cracks that can develop in the lining of the anal canal. The cracks can be superficial or deep, and can cause mild to severe rectal pain and bleeding, particularly during bowel movements. Anal fissures are generally treated with topical creams or warm baths.

Fistulae In Crohn’s disease (and very occasionally in ulcerative colitis), deep sores or ulcers might develop within the intestinal tract, particularly around the anal area.

These ulcers can eventually become abnormal channels or fistulae that connect different loops of the intestine to itself, or connect the intestine to other body organs such as the bladder, vagina, or skin.

Fistulae leak mucus, pus, and faeces into the connecting organ. Fistulae occur in about 30% of cases of Crohn’s disease, and often become infected. Small fistulae can be treated with antibiotics and other medical treatments, whereas large or multiple fistulae often require surgery.

Malabsorption and malnutrition The presence of Crohn’s disease in the small intestine can impair the absorption of essential nutrients such as carbohydrates, proteins, fats, and vitamins. This can eventually lead to malnutrition or specific nutritional deficiencies, although these tend to develop mainly if there has been extensive surgery or if the disease is extensive and of long duration. Medical treatments such as vitamin B12 injections and iron supplements can be useful in correcting certain nutritional deficiencies.

In more serious cases of malnutrition, supplements can be given in the form of concentrated nutrient solutions. Hospitalised patients can be given intravenous fluids and sometimes, total parenteral nutrition (TPN) can be given where all nutrients are supplied intravenously.

When to call the doctor

Emergency calls

During the course of your IBD, there might be times when you need or want to consult quickly with your doctor by telephone—for example, if you experience sudden and severe symptoms or you develop a worrisome reaction to a new medication.

An emergency call is necessary if you experience any sudden or dramatic changes in your condition, such as:

Many patients hesitate to call their doctor for fear of bothering a busy professional. But doctors often have dedicated staff such as a nurse or assistant who will serve as the first port of call. It’s worth asking your doctor whom you should contact and under what circumstances you can call (e.g., sudden and unexpected complications arising from your condition).

A call to your doctor is appropriate if you develop any significant—though not potentially life-threatening— symptoms such as nausea, headache, or body rash that you think might be related to your condition or to its treatment.

Reporting severe or unusual symptoms early can help prevent a manageable problem from developing into a far more serious situation.

• severe abdominal pain that lasts for more than one hour • significant or new rectal bleeding • persistent vomiting, accompanied by stoppage of bowel movements • drastic changes in bowel movements without any passing of gas • high temperature, especially if taking corticosteroids or other medications that might be affecting your immune system.

If you are unable to contact your doctor in an emergency situation, you should go directly to the nearest public hospital emergency department or to the hospital you usually attend. Be prepared to explain your illness and current symptoms. You’ll also need to provide the hospital staff with your doctor’s name and inform them about any medications you’re currently taking. It’s useful to carry a list of your medications with you at all times.

As a doctor who also has IBD, I’m convinced that teaching medical students and future doctors to read, listen to, and interpret the human stories they encounter in their practice is the surest road to giving patients the best care.

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DIET AND NUTRITION IN IBD In this section, we’ll talk about the role that diet and nutrition play in managing your condition and in maintaining your overall health.

Diet and nutrition in IBD In order to maintain good health, a well-balanced and nutritious diet is essential for absolutely everyone, but is even more so for those with IBD, which can interfere with the absorption of nutrients from food and increase energy demands on the body. A good diet can help you cope better with IBD by building up your body’s reserves of energy and essential nutrients.

To understand the importance of diet and nutrition in the management of IBD, it’s useful to have some knowledge of the function of some major parts of the GI tract.

The main processes of digestion and absorption take place in the small intestine. Most of the breakdown of food occurs in the first segment of the small intestine, the duodenum. The middle segment, the jejunum, digests carbohydrates. The final segment, the ileum, breaks down fats and absorbs vitamin B12 and bile salts. Any remaining waste matter moves into the large intestine (colon) where water is absorbed back into the bloodstream. The leftover waste, which includes fibre and bacteria, is formed into faeces and expelled through the anus.

Why is diet so important in IBD? Food is fuel for the body. Eating a well-balanced diet that includes items from all major food groups (see next page) provides all the essential nutrients or building blocks that the body requires each day to grow, repair damage, generate energy, and protect itself from illness.

Those with IBD are at risk of becoming malnourished, especially those with Crohn’s disease in the small intestine. The main reasons for this are: • Loss of appetite due to nausea, abdominal pain, or altered taste sensations, leading to inadequate food intake.

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• Increased need for nutrients and energy by the body because of chronic inflammation. This is especially true during active stages of the disease.

• Poor digestion and malabsorption of dietary protein, fat, carbohydrates, water, and various vitamins and minerals. Those with Crohn’s disease of the small intestine, or those who have had all or parts of their small intestine surgically removed, might be at higher risk of malabsorption.

Diet and good nutrition play a key role in managing your IBD as they are important for restoring the body to health. A well-balanced diet can help you through episodes of active disease, keeping you in much better condition. Good nutrition also increases the chances

of a better response to medications or a better outcome if surgery is required to remove part of the intestine.

Younger people who develop Crohn’s disease or ulcerative colitis before the onset of puberty might experience a delay in growth. To some extent, this is related to the presence of chronic disease in the body, but is most often the result of inadequate food intake. Good nutrition and adequate energy intake for one’s age and gender are therefore highly important in children and adolescents with IBD.

What exactly is a good diet?

A good diet is one that contains items from all major food groups. Eating a variety of foods from each of these food groups every day will help ensure that you’re meeting all your needs for energy and essential nutrients such as carbohydrates, protein, and fats, as well as vitamins and minerals.

Breads and cereals • Foods in this group include bread, breakfast cereals, pasta, rice, cracker biscuits, muffins, and crumpets. These are all good sources of fibre—especially the wholemeal and wholegrain varieties—and resistant starch. Resistant starch is starch that is not digested in the small intestine, but passes into the large intestine where it fuels bacterial fermentation. The products of this fermentation provide fuel for the gut wall lining and help maintain the overall health of the large intestine.

Meat and meat alternatives • This group includes lean meat, poultry, fish, eggs, nuts, tofu, and legumes (beans, chickpeas, lentils). These foods are an important source of protein and energy.

• Lean red meat provides an excellent source of iron and zinc. Including lean red meat in your diet three to four times each week will help you to meet your iron requirements.

• Meat, poultry, fish, and eggs also contain vitamin B12, which might be poorly absorbed in people who have Crohn’s disease in the last (terminal) part of the ileum.

Fats and oils • Polyunsaturated or monosaturated vegetable oils and margarine are important sources of energy. They also contain many essential fat-soluble vitamins such as vitamins A, D and E. These are often called good fats because they have no adverse effect on cholesterol levels. Canola margarine, canola, and olive oil are recommended.

• It is important to distinguish polyunsaturated or monosaturated fats from saturated fats, which are mainly animal fats such as butter, meat drippings, ghee, and palm oil. Saturated fats have no known benefits to human health and increase cholesterol levels.

Other foods

Fruits and vegetables

• Foods that are high in sugar such as soft drinks, lollies, honey, and jam tend to be recommended only in small quantities. They are sources of instant energy and can be useful to those who have experienced significant weight loss and are trying to regain weight. On the other hand, those who are well and are gaining too much weight should avoid these extra-energy foods.

• Starchy vegetables such as potato and corn are good sources of carbohydrate. All other green, yellow, orange, white and red vegetables are good sources of many vitamins and minerals.

Can a good diet prevent or cure IBD?

• Breads and cereals provide valuable energy for the body in the form of carbohydrates, and also supply protein, vitamins (B-group and folic acid), and minerals (zinc and iron).

• Fruits contain carbohydrates and are good sources of energy, fibre, and anti-oxidants. Fruits also contain many essential vitamins and minerals such as folic acid, vitamins A and C, iron, magnesium, and vitamin B6.

Milk and milk products • This group includes dairy products such as milk, yoghurt, and cheese, as well as calcium-fortified soy milk and soy yoghurt. These foods are an important source of calcium and also provide energy, protein, and zinc.

• Calcium is essential to bone health and is especially important for those who require corticosteroid treatment.

Meeting your daily calcium needs would be very difficult without this food group.

To put it simply: diet is not the cause of IBD nor is it the cure.

There is little evidence to suggest that dietary factors cause IBD. Likewise, it is not possible to make your condition go away permanently by adding or eliminating certain foods from your diet, or by eating only particular types of food.

Some find that a particular food aggravates their symptoms; eliminating this food can make a positive difference.

For most though, the key to managing their condition is in eating a well-balanced diet that includes items from all major food groups. Good nutrition improves overall health status, supports the healing process, and can enhance the response to medications. A poor diet makes it more difficult for the body to counteract the effects of IBD.

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Is there a special IBD diet?

Most people with Crohn’s disease or ulcerative colitis can tolerate all types of food and don’t require any dietary restrictions. In fact, avoiding certain foods or eliminating an entire food group can contribute to nutritional deficiencies.

During flare-ups of disease, some find that a bland, low-fibre diet is easier to tolerate than one that contains high-fibre or spicy foods. Low-fibre diets are those that avoid the skins and seeds of fruits and vegetables, as well as nuts, dried fruit, seeds, bran, and whole grains. These diets tend to stimulate less secretion of intestinal fluids and cause less contraction in the small and large intestine, helping control symptoms such as abdominal cramps and diarrhoea.

In cases of Crohn’s disease when an area of the small intestine has become narrowed (i.e., a stricture has developed), a very low-fibre or even a liquid diet might be necessary to minimise the discomfort of abdominal cramping.

For each and every person with IBD, individual experience is the most useful guide to selecting the types of food that can or cannot be tolerated.

Foods that cause problems for one person with IBD might not affect another at all. If you follow the foods-to-avoid advice of others with IBD, including those on the Internet, you might find yourself eating a highly-restricted diet unnecessarily and increasing your risk of malnutrition. Remember, too, that foods you have to avoid during flare-ups might not be a problem when your disease is stable and you feel well.

In general, achieving and maintaining overall good nutrition far outweighs any sort of blanket recommendations about diet, or even— unfortunately—your own personal preferences. If you have a particular liking for a specific type of food that has caused you problems in the past, you are the one who can best decide whether the enjoyment of eating it from time to time is worth the possible symptoms such as pain, cramping, and bloating.

Is diet equally important for Crohn’s disease and ulcerative colitis?

The short answer is yes. The longer answer is that those with Crohn’s disease might have more specific issues with diet, depending on the location of inflammation.

Those with inflammation limited to the large intestine—including those with Crohn’s disease— absorb nutrients from food normally, so they tend to have a lower risk of weight loss and malnourishment, although a good diet is of course still important.

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Those with Crohn’s disease that involves the small intestine can have quite specific nutritional problems.

Despite eating enough food of the right kind, they might still be unable to absorb essential nutrients.

The degree to which absorption is impaired depends on which segments of the small intestine are involved, and/or whether any part of the intestine has been removed by surgery.

For example, Crohn’s disease in the jejunum (the middle segment of the small intestine) can impair the absorption of carbohydrates. If inflammation is limited to the very last part of the small intestine, the terminal ileum, it is likely that only the absorption of vitamin B12 will be affected. If most or all of the ileum is inflamed, significant malabsorption of fat can also occur; and if the upper regions of the small intestine are also involved, it’s possible to have deficiencies of many different nutrients, minerals, and vitamins.

In addition, some IBD medications, especially sulfasalazine, can interfere with the absorption of folic acid, which is essential in the prevention of cancer and birth defects.

For these reasons, those with Crohn’s might have highly individualised dietary needs, and/or require supplements to replenish nutrient stores. A dietitian can provide individualised advice and help plan meals to optimise nutritional intake.

Is IBD caused by an allergy to food?

Allergy Many people with IBD mistakenly think they’re allergic to food because they associate their symptoms with eating. It is important to know that Crohn’s disease and ulcerative colitis are not caused by a food allergy. The hallmark symptoms of IBD such as abdominal cramps, diarrhoea, and a sense of urgency to move the bowels are a non-specific reaction to the presence of inflammation in the GI tract. So there is no need to avoid any particular type of food because of a presumed allergy to food. Those who have a true allergic reaction to foods (e.g., peanuts, strawberries, etc.) might experience anything from a mild skin rash (hives) to an anaphylactic shock (a sudden and severe drop in blood pressure and difficulty in breathing).

Food allergies are a completely separate issue and should not be confused with IBD.

Food intolerance On the other hand, many people might not be able to tolerate certain foods (e.g., onions, milk, etc.) and can develop symptoms such as burping, bloating, or flatulence (gas).

(Some tend to confuse food intolerance with food allergy.

They are completely different, and your dietitian can help explain the difference in greater detail.)

If you’ve come to know through experience that you have difficulty tolerating specific types of foods, it’s best to avoid these whenever possible. You must ensure however that you replace these foods with alternatives to maintain an adequate diet.

FODMAPs New research suggests that some people with IBD might also experience symptoms of irritable bowel syndrome (IBS) and can benefit by avoiding foods that are termed FODMAPs. FODMAPs are a group of carbohydrates— fructans, galacto-oligosaccharides (GOS), polyols, fructose and lactose—that are poorly absorbed and are fermented by bacteria. The fermentation results in extra water moving through the bowel and excessive gas production.

Some examples of high-FODMAP foods are:

Fructans

GOS

Polyols

Wheat

Lentils

Stone fruits

Onions

Chickpeas

Mushrooms

Garlic

Nuts

Artificial sweeteners

Is it true that milk will make the symptoms of IBD worse?

The assumption that milk and milk products such as cheese, ice cream, etc. can worsen the symptoms of IBD is unfounded.

Instead, it’s now well known that many people (not just those with IBD) are unable to properly digest lactose—the sugar present in milk and most milk products—because they’re lacking the digestive enzyme lactase, which is normally present in the small intestine. Undigested lactose can lead to cramping, abdominal pain, gas, diarrhoea, and bloating.

The symptoms of lactose intolerance can mimic the symptoms of IBD, often making it difficult to tell whether it is IBD or dairy that is causing the problem. A simple procedure called a lactose-tolerance test or a lactose breath test can determine whether or not you are lactase-deficient. If you are, it might be necessary to use low-lactose milks and yoghurts and milk-free products, or suitable calciumcontaining substitutes. Additionally, a lactase supplement that breaks down lactose can be added to many dairy products so that they no longer cause symptoms. It is also important to note that most cheeses are low in lactose and can be safely consumed on a low-lactose diet. Your dietitian can provide further advice.

Anyone able to tolerate milk and milk-based products should include these in their diet as they are a good source of nutrition, especially protein, and are by far the best source of calcium. Supplemental calcium might need to be taken if milk and milk products are removed from the diet. Again, in this case, it’s best to speak to your dietitian. Lactase deficiency that becomes worse after bouts of diarrhoea can improve once the gut repairs. If even small amounts of milk can be tolerated at a time, lactose intolerance can be improved.

How much fluid do I need to drink?

Fructose

Lactose

Apples

Milk

Pears

Ice cream

Watermelon

Yoghurt

Dietary FODMAPs should not be restricted unless you experience symptoms of diarrhoea, bloating, abdominal pain, and flatulence that continue after your specialist has determined that your IBD has stabilised. A dietitian experienced in FODMAPs is essential in this situation.

There is some information about a low-FODMAP diet on the Internet, but much of this is outdated. You can visit the Monash University Low FODMAP Diet website for reliable advice www.med.monash.edu/cecs/gastro/fodmap.

Any condition with chronic diarrhoea increases the risk of dehydration if fluid intake does not keep up with the fluid loss. The risk of dehydration in IBD can be worsened by vomiting and/or poor food intake.

Dehydration and loss of body salt can cause weakness and easy fatigue, so it is important to consume plenty of fluids, especially in warmer weather conditions. Aim for six to eight glasses (250ml) of fluid per day (total of 1.5 to 2 litres), including lots of water, and increase this amount as the outside temperature increases or if you are physically active.

Those with Crohn’s disease and ulcerative colitis have a greater chance of developing kidney stones. This is partly related to dehydration, but is a very specific issue among those with Crohn’s disease who’ve had all or part of their ileum surgically removed. The resection of 60 cm or more of the ileum can result in increased absorption of oxalate, which then reacts with calcium in the urine to produce calcium-oxalate kidney stones. People who have had part of their ileum removed might need to reduce the amount of oxalate in their diet by avoiding certain foods known to be high in oxalate.

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There is a long list of these food items but some examples include: spinach, cocoa, beans, rhubarb, beetroot, almonds, cashews, wheat bran, chocolate, instant coffee, and tea. In some cases, medications to prevent the formation of calcium-oxalate kidney stones might be needed. For most, the easiest and most efficient way to prevent the development of kidney stones is to drink plenty of fluids in order to keep the urine as dilute as possible.

Do I need to take vitamin and mineral supplements?

Because vitamin and mineral deficiencies are relatively common among those with IBD, taking a standard multivitamin and mineral tablet each day might be beneficial. The need for more specific supplements depends on the extent and location of disease. Your treating specialist will advise you of any specific requirements you might have.

Is there anything special that can be done during flare-ups?

During IBD flare-ups, it might be necessary to make some dietary changes to help control symptoms and minimise any detrimental effects IBD has on your overall nutritional status and health. Dietary changes might also be required if you have a bowel obstruction, have undergone surgery or, in some cases, need to rest the bowel and give it an opportunity to heal.

Generally, any changes to your diet or supplements that need to be taken—in addition to or in place of a normal diet—are temporary measures that last only until the inflammation is under control. These need to be carefully monitored by your clinical team to ensure that all your energy and nutritional needs are being adequately met.

High energy/protein supplements During active stages of IBD, the energy demands on the body increase and there can be a considerable loss of protein through the wall of the small and large intestine.

It could be difficult to keep up with protein intake because of symptoms such as nausea and diarrhoea.

This can lead to significant weight loss and reduced protein status which could result in weakness and fatigue.

High energy/protein supplements can help provide and replenish nutrients during the times when it is difficult to eat. These supplements are available as milk-, soy-, and fruit-based drinks which provide an easy-to-take source of both energy and protein. Your dietitian should be able to advise you regarding some common food ingredients that can be used to make supplements, as well as powdered and ready-to-drink supplements.

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Low or modified fibre diets A low-fibre diet is one that contains a minimal amount of fibre or bulk. It is often used when there is active disease in the large intestine or terminal ileum, or when there is partial obstruction in the small intestine.

By limiting the amount of undigested food matter (fibre) that passes through a narrowed section of small intestine and/or reaches the large intestine, a low-fibre diet can reduce irritation and decrease symptoms such as pain and abdominal cramping.

Breads (wholemeal or wholegrain), cereals, fruits, and some vegetables are foods that contain the most amount of fibre so these need to be limited in a low-fibre diet. White bread, pasta, rice, cracker biscuits, refined breakfast cereals such as Cornflakes™, Rice Bubbles™, and Special K™, as well as vegetables such as potatoes, carrots, and pumpkin are all freely permitted. Food groups such as meats, dairy products, and fats and oils are also freely permitted because they don’t contain dietary fibre. In the event that you are advised by your clinical team to follow a low-fibre diet, your dietitian can help.

Low-fibre diets tend to be used for short periods of time only, just until the inflammation has settled.

High-fibre foods can then be gradually re-introduced into the diet.

Liquid diets Specialised liquid formulations (or enteral feeds) might be necessary if there is major bowel obstruction or severe disease, or if surgery has been done on the small intestine. Avoiding all solid food and replacing it with liquid formulations can help reduce inflammation, rest the bowel, and reduce the need for high doses of corticosteroids.

Liquid formulations have been shown to be as effective as corticosteroids in treating children with active disease and can also assist in maintaining their growth.

Supplementary liquid feeding or exclusive liquid feeding for a short period can also help keep Crohn’s disease in remission.

Liquid diets are usually given for several weeks, followed by a gradual re-introduction of food and tapering off of the liquid formulations. These diets need to be carefully monitored to ensure that all your nutritional needs are being met.

Liquid formulations are consumed by mouth or fed by tube directly into the stomach or small intestine.

Although these formulations still need to be digested, they are easier to digest and absorb than food.

They are often lactose-free and gluten-free and some are low in fibre, making them less likely to irritate the intestines. Some formulations can be elemental, that is, they contain nutrients that are already broken down into the most easily absorbed (elemental) form,

therefore giving the bowel a chance to rest. Research suggests, however, that elemental formulations have no advantage over other liquid formulations. Your clinical team will advise you. Tube feeds are usually done in hospital but, with sufficient training, can also be carried out at home.

There are several liquid formulations that are suitable to drink. The choice will depend on your needs and taste.

Some liquid formulations also have flavourings to make them more enjoyable.

I’ve heard that ‘prebiotics’ and ‘probiotics’ can help in IBD. Can you explain what these are?

A large number of micro-organisms or bacteria live in the large intestine: some are good, others not so good.

Depending on which bacteria predominate in the large intestine of a person, the health of the intestine can be affected positively or negatively.

Although there is no convincing evidence to suggest that intestinal bacteria cause IBD, it is thought that they might be contributing to the inflammatory process among those who already have IBD. At the moment, research is looking into whether changing the type and/or the level of various bacteria in the large intestine can help in the treatment of IBD.

Prebiotics Prebiotics are non-digestible food ingredients (fibre) such as non-starch polysaccharides (a type of carbohydrate) and resistant starch. They provide nutrients that stimulate the growth or activity of ‘good’ bacteria in the GI tract.

Examples of sources of prebiotics are stalks and leaves of vegetables, outer coverings of seeds and fruits, bread, potatoes, and bananas. Bacteria in the gut use this non-digestible food matter to produce short-chain fatty acids (SCFA) such as acetate, butyrate, and propionate.

These SCFA have a number of beneficial effects: • they are used as fuel by the colon wall, liver, heart, and lungs • they increase the absorption of electrolytes and fluid, reducing the risk of diarrhoea

formulations. Research suggests that probiotics might play a role in maintaining remission among those with IBD by acting in some important ways: • they counteract dysfunction of the immune system by preventing bad bacteria from populating the intestinal wall • they prevent infection by ensuring that the intestinal wall remains healthy • they improve the production of healthy by-products, such as butyrate, in the large intestine.

Prebiotics and probiotics have different, but complementary, mechanisms. Increasing the amount of non-starch polysaccharides and resistant starch in your diet is an easy and inexpensive way to improve the health of your large intestine. Adding yoghurt to your diet is not only easy to do, it also provides an excellent source of calcium and plenty of ‘good bugs’ for your intestine.

A word of caution, however: not all probiotics are created equally. You’ll need to consider the dose as well as the strain of probiotic to determine if the therapy will be of benefit to you. Speak to your clinical team to determine the best course of action.

What about fish and fish oil?

A lower incidence of IBD has been found in countries such as Japan, where fish consumption is traditionally high.

The omega-3 fats found in fish are anti-inflammatory and, whilst more research is needed for IBD, there is some evidence to suggest that fish oil can help people maintain remission longer.

You can get certain amounts of omega-3 from green leafy vegetables, walnuts, canola, and linseeds, but eating several fish meals a week is the best way of ensuring adequate intake of omega-3 fats. Fish also a great source of protein and other nutrients.

Fish oil capsules can supply much larger amounts of anti-inflammatory omega-3 fats. If you wish to take fish oil via capsules, ask your clinical team for advice as you might need a number of capsules a day. Fish oil should be taken before a meal to avoid repeating (burping) a ‘fishy taste.’

• they increase the efficiency of digestion by slowing down the rate at which food moves through the small intestine.

Butyrate in particular appears to be especially useful as it is the preferred fuel of colon cells and helps to maintain their integrity. Clinical studies in patients with ulcerative colitis have shown that infusion with butyrate can result in prompt healing of the lining of the large intestine.

Probiotics Probiotics are food supplements containing ‘friendly’ bacteria that change the population of bacteria in the large intestine from ‘bad’ to ‘good.’ Probiotics are available as yoghurt or yoghurt drinks and in capsule or powder

A dietitian is a vital member of your clinical team and will help you work out a dietary plan that is just right for you. In Australia, Accredited Practising Dietitians (APDs) must be members of the Dietitians’ Association of Australia (DAA). You can locate a dietitian near you by visiting the DAA website www.daa.asn.au. Within the website, you can find an Accredited Practicing Dietitian on the link http://daa.asn.au/for-the-public/find-an-apd

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EMOTIONAL EFFECTS OF IBD This section presents several real-life scenarios that people may encounter when living with IBD, along with some typical emotions these situations can invoke. You might experience some or none of these emotions, or experience them in varying degrees. The important thing is to identify what’s relevant for you and to do what you think is best.

Diagnosis: the beginning of the journey There’s no doubt that IBD can have a significant impact on many aspects of daily life. The physical effects of the condition vary in degree and there’s no standard experience, as every person is different.

Likewise, the effects of IBD on the same person can change over time. Someone who has Crohn’s disease or ulcerative colitis is likely to experience a wide range of emotions at different stages of the disease. These may be related to the disease itself, its treatment, or its impact on daily life.

For many, a diagnosis of IBD comes with a sense of shock and disbelief: is it really possible that I have to put up with this condition for the rest of my life?

It’s not uncommon to somehow feel detached and disassociated from yourself as the diagnosis is delivered. You might be in shock. But you might also feel relieved to finally know what’s been going wrong, while still feeling fearful as you ponder an uncertain future with IBD. What can be said at the outset is that: you’re most definitely not alone.

These feelings are only natural and can even crop up again from time to time during the course of your disease. But once the initial shock of the diagnosis has worn off a little, you might find it useful to remind yourself that most of those with IBD can and do lead normal lives, complete with career, family, friends,

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travel and various leisure activities. Also, life expectancy with IBD is normal. There might be some additional challenges along the way but, for the most part, you can expect to lead a normal life.

In the meantime, it is common to feel confused as you grapple with feelings of anger, despair, frustration and a sense of loss of control over your own destiny. You will probably look for reasons and causes. At present, there’s still no answer to the question of why IBD affects some people and not others, other than to say that it is likely caused by a combination of genetic and environmental factors that set off a ‘super-active’ response in a susceptible person’s immune system.

Once you’re able to come to terms with the fact that your IBD wasn’t preventable or avoidable, negative feelings can give way to more positive thoughts about how you can best control your condition so that it doesn’t control you.

In the days, weeks, or months following your diagnosis, you will probably feel a sense of loss, anxiety, and depression as you realise that a big aspect of your life has now changed.

The next stage is to identify a problem-solving strategy that works for you.

You may feel varying degrees of:

Health professionals have developed a management strategy that is simple in design and based on four key ideas.

It’s easily remembered by the word it spells COPE.

• Shock

C for Creativity

• Anger

O for Optimism

• Anxiety

P for Planning

• Loss

E for Expert Information

• Depression

The first step in the management strategy is to identify a central issue. Then refine the issue and simplify it so that you can understand it in its true essence. You may be experiencing many different problems that all seem to be inter-related. But try to choose one(s) that you can work on and which will make a significant and positive difference to your life.

This is not surprising. These emotional reactions are typically associated with the diagnosis of a chronic illness and are considered to be normal. But this is not necessarily what you want to hear; they’re not a normal experience for you and possibly the emotions are uncomfortable and distressing. You don’t want to feel them. For some people, the emotional experience can be more difficult to manage than the illness itself.

Learning to manage emotional distress: how do you travel?

The diagnosis of a serious illness or the recurrence of disease symptoms after a period of relative good health can affect the very core of our beings. They can affect: • Our self-esteem – How we see ourselves • Our self-confidence – What we feel we can do and achieve • Our sense of worth – How we think others see us Having a comfortable level of self-esteem, confidence and self-worth are all central to healthy emotional and psychological functioning in our day-to-day life.

Following a diagnosis of IBD, it’s expected that you’d feel some degree of shock, anger, anxiety and depression.

It’s fairly certain that these are things you’d much rather not be feeling.

Allowing yourself to experience uncomfortable emotions is part of the road to feeling better. It’s about acknowledging your feelings and recognising that you’re entitled to have them. This is often referred to as a ‘normalising’ process.

It takes away the responsibility or guilt you may be harbouring unnecessarily, for what may well be a legitimate experience.

Normalisation of the experience doesn’t necessarily alleviate all the uncomfortable emotions but it does reduce the sense that you’re fully responsible for your feelings, or that you could alter reality if only you tried harder. Try not to judge your feelings too harshly. They could be offering you important clues as to how you can come to terms with your experience of IBD and assist you in making decisions about your future.

Be patient with yourself and with what you’re feeling.

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Then apply the key concepts of the COPE strategy.

These are: 1. Creativity – Look for different pathways that you could implement to manage a particular challenge.

Then adopt the one that you believe is most likely to work for you.

2. Optimism – If you believe there’s a good chance of succeeding, you’ll do your best to make it happen.

If you think at the outset that the problem is hopeless and that nothing will work, you’ll become easily discouraged. Try to be realistic in terms of your optimism.

3. Planning – Break down the management pathway into small achievable tasks. Consider the advantages and disadvantages of the different approaches.

Rather than focusing on identifying an immediate one-stop solution, be prepared to modify parts of your plan as you go along should you encounter an obstacle.

4. Expert Information – You might not exactly know how to define the problem in the first instance, or how to achieve your plan. Just keep in mind that a lot of people can work with you, including your GP, specialist, nurse, psychologist, social worker and other experts in the community. You can choose and decide who can give you the best expertise and support.

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Solving problems is not always a straightforward, logical process. If you’re already distressed, you might take a quick and easy approach. On the other hand, adopting an approach that takes time but gives you the and valuable opportunity to learn along the way usually results in a better outcome. And if you encounter obstacles, or feel that success is eluding you, you can always return to the COPE principles.

My IBD is not going to define who I am and what I’m going to achieve.

Sometimes it gets in the way and I just have to accept that, but I don’t let it lead the way. I lead the way.

Let’s take an example.

Identify the central issue: ‘I’m feeling isolated.’

Refine the central issue: Feeling isolated is a major issue that might have external and/or internal origins. The issue of ‘isolation’ on its own is perhaps too big and too vague to tackle successfully. It needs to be broken down into smaller component parts that can be worked on individually.

Step 1: Ask yourself what’s brought about the feelings of isolation. Externally, are you lacking social contact because you’ve been unable to go to work or school or have become ‘housebound’ either by choice or necessity? Or internally, if you have been able to maintain a level of social contact, are you feeling isolated because deep down inside you think that no one understands you and what you’re going through and never will? Let’s say it’s to do with a lack of social contact after a couple of weeks in hospital for surgery and several more weeks at home to recover.

Step 2: Is the lack of social contact mainly to do with family, friends or the work/school environment? Choose the one that is bothering you most at the moment. Let’s say it’s to do with friends.

Step 3: Think realistically and be honest with yourself.

Have your friends seemingly ‘disappeared into the ether’ for reasons unknown even though you’ve tried your best to stay in touch? OR, have you consistently rejected their approaches because you were feeling too sick, too tired, too embarrassed, too low at the time for company?

Let’s say it’s to do with you rejecting their approaches.

Step 4: Choose one or two friends who mean the most to you. Then make the effort to reconnect.

Apply the COPE management strategy: Creativity: You could ring, e-mail, or text your friend/s to say: ‘G’day. I’m so sorry it’s been so long since I’ve been in touch. How’s it going?’ Even if you don’t feel up to a social encounter just yet, they’ll be pleased to hear from you.

Optimism: Give them the benefit of the doubt.

Understand that some people might not have to skills to cope with another person’s illness, may have their own life issues to deal with or, if several months have elapsed since you last connected, may simply have decided to move on.

Don’t assume anything at the outset. Perhaps they thought they were doing you a favour by giving you the time and space to get yourself sorted. Or perhaps they were a little bit annoyed that you rejected them (possibly more than once?) when they were simply trying to be a friend. A true friend will be there for you no matter what, but friendship is always a two-way street.

Planning: Before making contact, think of things you could do when you do reconnect. Given that you’re the one making contact, it’s up to you to have some ideas in mind. If you’re not yet up to going out to cafés, restaurants or movies, keep it simple. Invite them over to your place for lunch or afternoon tea or to watch a DVD. And if that’s still too difficult, simply tell them that you haven’t forgotten them and that you’re looking forward to catching up when things get better. Then be sure to follow up on your promises, even if it means ringing them again to say that you’re not quite right yet but hope to be soon.

If you don’t hear back from them after you’ve made contact a few times or if they’ve repeatedly declined your offers of getting together, you may have to revise your optimism.

It’s possible they’ve got their own issues to deal with or, indeed, have decided to move on for their own reasons.

Try not to be too discouraged. Life is dynamic and it never pays to look back. You too might need to move on. Try one or two other friends and use the same approach.

When you do make contact, it’s important that the conversation is not just about you and your illness, although that can also be an important part of reconnecting. Take an active interest in their lives and activities so that they’re getting the positive re-enforcement that friendship provides.

Importantly, give them the opportunity to be there for you when you need them. They’ll regard it as a privilege and an honour if it’s not abused!

Expert Information: Discuss your feelings of isolation with your clinical team, perhaps your GP or nurse. They’ll have dealt with this same issue many times over and may have other methods for you to consider. An example might be an IBD Support Group in your neighbourhood, which can provide a good opportunity for you to share your feelings and frustrations with those who share your experiences, and possibly make new friends in the process.

Once you’ve learnt to apply the COPE principles to one aspect of your feelings, you’ll soon see how the strategy can be applied to others.

Finding support: travelling partners Managing problems on your own is important. It gives you a sense of control, which in turn improves your confidence and self-esteem. It’s best therefore to consider self-management as a first strategy.

It’s not always possible though to have all of the answers to all of your problems yourself. At times it’s appropriate to find a travelling partner—someone who can share part of the problem-solving process with you. This can be a family member, a treating professional, a work colleague, a friend or a combination of different people. Whomever you choose, you need to trust that even though you will do most of the work yourself, your companion/s will be there to guide and support you along the way.

Trust your judgement as to who the right people are and what their role can be in this partnership. Remember that at times they might also feel a sense of helplessness with your condition. But at least you’ll have given them an opportunity to participate in a way that is useful and meaningful to you and to them.

Managing difficult emotional experiences: risks along the way Despite all our positive efforts to manage the emotions of a diagnosis or ongoing illness, sometimes nothing seems to work. There might be times when you think that you’re completely losing your mind. This is not the case and it could be that you’re also experiencing depression or anxiety.

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There’s established medical evidence that a diagnosis of Crohn’s disease or ulcerative colitis can result in a proportion of people developing either depression or anxiety. These are very real but treatable medical conditions that can and should be addressed.

You might have an anxiety disorder if, over a six-month period, on more days than not, you experience:

Like IBD itself, depression and anxiety are not something within your control, and this is often difficult to understand at first. But effective treatments are available that will allow you to achieve emotional balance and gain a greater sense of control. This will be an important step in your overall recovery.

• discovering that your anxiety is making it difficult for you to do everyday activities.

Depression It’s only natural to feel down or distressed at times when living with IBD. You might have depression if, over a two-week period, you find that: • you feel worthless or excessively guilty • you feel sad, down or miserable most of the time • you’ve lost pleasure or interest in most of your normal activities.

You might feel these alongside these other symptoms: • a loss or gain of weight or a decrease in appetite • sleep disturbances • slowing down, feeling restless, or feeling overwhelmed • feeling tired or having no energy • experiencing poor concentration or difficulties thinking • having recurrent thoughts of death.

Discuss the symptoms with your doctor or clinical team as soon as possible. Your symptoms could be the result of your condition or the treatment you’re receiving, or it may be that you’re experiencing depression as well. Your clinical team will be able to work it out with you and then explore the best treatment options.

Anxiety Another common condition associated with IBD is anxiety. We all experience anxiety from time to time and it could be difficult to know what’s normal and what’s not, particularly if you have been unwell for some time. Also, the signs and symptoms of an anxiety disorder tend to develop gradually over time, which can add to the overall confusion.

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• feeling very worried • finding it hard to stop worrying

Discuss the symptoms with your doctor or clinical team. The anxiety you’re feeling could be the result of your IBD or the treatment you’re receiving, or it may be that you have an anxiety disorder. Your clinical team will be able to work it out with you and explore the best treatment options.

Living with someone diagnosed with IBD IBD undoubtedly affects the individual with the diagnosis. What’s often not acknowledged is that IBD also affects family members, friends and associates to varying degrees. While they might not have the physical symptoms themselves, they can have a sustained emotional response to another person’s illness.

Much of the information provided thus far in terms of individuals with IBD adjusting to the diagnosis and identifying strategies to manage their condition is just as relevant to those who are close to someone with the disease. Not having the diagnosis yourself doesn’t mean that you’re not affected, both in terms of what you see the person going through and what you experience in your own right.

If you are close to a person who has IBD, you will have to acknowledge your own experiences and recognise the importance of your role in terms of helping your friend, partner, or family member cope with the disease. You’ll need to accept and appreciate that you’re also vulnerable to difficult experiences and emotional distress. The COPE strategy outlined previously can also apply to you, and you are equally entitled to any available help.

Services available to people living with IBD: partners in the journey Section 18 of this book provides a useful summary of resources and services available for those living with IBD. It’s by no means exhaustive but can be a good starting point towards identifying available support.

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SECTION 11

SEXUALITY AND IBD This section covers the main issues on sexuality that commonly affect or concern those with IBD.

Sexuality and IBD Although IBD can occur at any age, most new cases are diagnosed between the ages of 15 and 35 years—a time in life when people might be experiencing issues on body image as they are forming important social and intimate relationships. It is only natural for many questions and concerns to arise about the potential impact of IBD and its treatment—including diet, medication and surgery —on sexuality, sexual function, and sexual development.

Some of these concerns could be emotional in nature: ‘Will I be attractive to a potential partner?’ or ‘How do I even begin to tell someone about my condition?’ Others might be physical concerns: ‘Will IBD affect my sex drive?’ or ‘Will surgery have any impact on my ability to have sex?’

I worry that no one will find me attractive In addition to the pain and fatigue of IBD, having a negative body image can be a real issue in terms of developing and maintaining social and intimate relationships. To complicate things, rushing off to the loo 15 or 20 times a day is not particularly sexy.

And side effects such as a round puffy ‘moonface’ or facial acne when taking high doses of corticosteroids can make people want to avoid mirrors at all costs.

As sad as it is, it appears that society places a higher value on looks than on the inner person.

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The best advice we can give: don’t buy into it!

You know who you are: just a normal person with everyday needs and desires, one who has plenty to give and plenty to live for, and one who has made a very positive and conscious decision not to be defined by his/her condition.

While it might be easier to be ‘up’ when you are feeling well, there is no doubt that you will need to dig deep into your inner resources during the more difficult times of active disease. This is often a matter of sheer willpower. Keep an eye on the big picture, which includes all aspects of your looks and personality.

Pay attention to your grooming, participate in as many activities as you can, keep your health up to scratch by eating a well-balanced and nutritious diet, and do not let anyone or anything stop you from doing what you really want to do.

Finding that special person or developing a meaningful relationship can be difficult for anyone, including those without IBD. No need to despair. It is not the IBD that will hold you back. The more you open up and communicate with your friends and family, the more likely they are to recognise and appreciate the real you, someone with a true sense of self and who is not a victim of a particular condition. At the end of the day, the real you is your most attractive characteristic.

Sometimes, the biggest issue you have to deal with when it comes to being attractive to others is the value you place on yourself. This will not always be easy, especially when you start feeling depressed (which is common among those with IBD).

If your depression is not recognised and treated, it can hinder you from forming and maintaining intimate relationships. In fact, depression is a significant aspect of IBD and has been found to be the biggest risk factor for impaired sexual function, second only to active disease. If you, or those around you, think you are depressed, do not hesitate to discuss this with your doctor or clinical team. Facing up to depression is the first step to getting better and feeling attractive.

How do I tell others about my condition?

There is no doubt that opening up to a potential partner about your condition can be stressful. The key question is: ‘Will they run for the hills?’ Certainly many people will not even have heard about IBD before and might not be able to immediately grasp the scope and implications of your condition. Fair enough: bodily functions are not something most people would feel comfortable discussing on the first few dates. In the same vein, there are many other things that you will not wish to tell another person about until you get to know him or her better. In time, you will be able to determine instinctively whether the person that you are with is right, or if the timing is right to discuss your condition in detail.

Most people will appreciate your honesty and it could open up further channels of communication that bring you even closer together. The best advice is to keep things simple at first. There is no need to include every single detail about your condition; there will be plenty of time for more talks as the relationship progresses. Just be honest, confident, and positive about the future. People will take their cues from you.

What is the best way to discuss my concerns with my clinical team?

It might seem at times that some members of your clinical team are extremely busy and will tend—or need—to focus on your immediate problems rather than your overall health.

This might make you feel somewhat reluctant to bring up your concerns about your sexuality and sexual function. It is important to remember, however, that IBD clinical teams are becoming more and more aware of the many ways that IBD affects on a person’s life beyond the physical symptoms of

intestinal inflammation. So do not be shy to raise any questions or concerns you might have with your gastroenterologist or IBD nurse (if you have one). If they are not able to deal with your specific concern, they can always refer you to another member of the clinical team. And just so you do not forget to ask those all-important questions in the middle of a consultation, consider making a list of topics for discussion at your next appointment.

Will IBD affect my sex drive?

Understandably, many with IBD find they have less interest in sex when their disease is in an active stage. Symptoms such as abdominal cramping and diarrhoea can make them reluctant to engage in sexual activity because of pain, embarrassment, or fear of having an ‘accident.’ Or they might simply lack the energy for sexual activity during a flare-up because of under-nutrition and dehydration. This is yet another reason why keeping good control of your disease is so important. For many, this involves taking maintenance medications to keep the disease in remission. And it is always a good idea to discuss with your partner the ways in which you can meet each other’s sexual needs during periods of pain or fatigue.

How can I meet the sexual needs of my partner?

Most people with IBD are physically capable of having sexual intercourse but, just like everyone else, might not feel like it at times. There might be problems with abdominal pain, fear of incontinence, or sheer tiredness. There could also be mixed feelings of wanting to have sex and not wanting to have sex for fear of turning off their partner. As always, open and candid communication is the best solution.

Remember, sex begins and ends in the brain!

Reassure your partner that it is nothing personal; sometimes he or she might not be in the mood for intimacy for entirely different reasons, and you will accept that with good grace as well.

Give your partner the opportunity to be understanding and supportive. Most people rise to a challenge and it can only help to enhance and strengthen your relationship.

Remember that your partner loves you for who are as a total person and is not fixated on any particular activity or body part.

There are many ways to be sexually intimate that do not involve intercourse. You can have romantic dinners or take long strolls along a beach. Talk about your feelings and fantasies. Kiss and cuddle like you did back in the days when you first met. Anticipate the times ahead when you are feeling better—which is at least half the fun!

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Will the medications that I am taking affect my sex drive or performance?

well-trained surgeon will recognise the areas where risk to the nerves is greatest.

Most medications commonly used to treat IBD do not particularly affect sexual desire or performance. In fact, if the medications are working well and are keeping your disease under control, you are more likely to feel interested in sex. People with Crohn’s disease frequently need antibiotics to treat their symptoms and complications such as fistulae or abscesses.

Women taking antibiotics might develop a yeast infection in the vagina (called thrush or candidiasis) which can cause unpleasant symptoms such as itching and soreness, but this does not affect sex drive in any other way.

Removal of the rectum in women with IBD can cause the ovaries and uterus to re-position themselves within the pelvis. The could result in pain during intercourse, but only temporarily.

Will surgery affect my sex drive or performance?

Many people with IBD can expect to have at least one surgical procedure during the course of their disease, either to treat the condition itself or a complication arising from the condition. As with any other surgery, strenuous activity (including sex) should be avoided until sufficient time has been allowed for healing to take place. The amount of downtime you will need will depend on the type and extent of your surgery. You should ask your surgeon or clinical team specifically about this issue if you have any concerns.

Some people who have had parts of their intestine removed (surgical resection) will have a stoma, which is a surgically created opening in the skin of the abdomen. A bag or appliance needs to be fitted over the stoma to collect intestinal waste. Although wearing an appliance has no physical impact on sexual function, it could be somewhat awkward and embarrassing at first. Care must be taken during any type of physical activity, including sex, as the appliance might leak or become dislodged. Other than that, there are no restrictions on sexual activity. For your own personal comfort, it will help to empty the pouch before sex or to camouflage it with specially designed underwear. The stoma therapist at your hospital will be able to provide you with the most up-to-date information and tricks to deal with this potentially embarrassing issue. Do not be afraid to bring it up.

It is a very common question!

People who have had pouch surgery—also known as ileal pouch anal anastomosis (IPAA) or restorative proctocolectomy—often feel better overall after this type of operation and experience improvement in the sexual aspect of their lives. On the other hand, in instances where surgery is difficult because severe disease has destroyed surrounding tissues, there is a risk of injury to the pelvic autonomic nerves. Disturbing the pelvic nerves can create erection and ejaculation problems for men and may decrease clitoral sensation in women. This is relatively rare, however, and a

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Does IBD affect the sex organs?

IBD does not have any direct effect on the sexual organs or genitals per se, as the disease is limited to the gastrointestinal tract. Crohn’s disease, though, might have an indirect effect on sexual organs. An abnormal channel or fistula might develop between the intestine and another organ, such as the vagina, which can leak intestinal contents into the connecting organ. Crohn’s disease can also lead to the development of abscesses (localised sacs containing intestinal fluid, bacteria and pus), skin tags (lumps of thickened skin) or fissures (ulcerated tears or cracks) in and around the anal region. If you think you might have these problems, it is important that you speak with your doctor earlier rather than later as treatment is more successful if the problem is addressed promptly. These complications can usually be corrected with medication or surgery. For more information, see Section 8 ‘Complications of IBD.’

Does IBD affect sexual development?

When IBD occurs in younger children before the onset of puberty, there could be a delay in sexual development. This occurs however only if the disease is severe enough to delay growth in general or to cause a child to become underweight. It is estimated that up to one-third of children with Crohn’s disease might grow and develop more slowly than their peers.

The main reason for this is lack of adequate nutrition— as the child tends to eat less to avoid pain, cramping, and diarrhoea—and/or because of impaired absorption of essential nutrients in the small intestine.

Children who take corticosteroids to control inflammation might also experience delays in growth or at the onset of puberty. This is usually managed effectively by taking the lowest dose possible for the shortest time possible to control symptoms; by taking corticosteroid-sparing medications such as azathioprine (which could reduce the need for frequent use of corticosteroids); and sometimes by taking corticosteroids only on alternate days.

Whatever the reason for the delay, although some children with IBD might start puberty later, eventually they will catch up and mature normally.

On the other hand, perhaps the biggest issue with delayed sexual development in children with IBD relates to how they view themselves compared with their peers. Adjusting to puberty is unsettling for any child and is even more so for children with IBD. Not only do

they have to contend with a painful disease that causes distressing and often embarrassing symptoms, and cope with taking medications such as corticosteroids that can affect their outward appearance—they also will probably look different from their peers.

This is why children with IBD need plenty of understanding, support, information, and reassurance during this difficult phase. It is best to be honest with them when they ask some difficult questions and to reassure them that their sexual development will be normal in time.

Keeping up regular attendance at school is absolutely vital to ensuring that a child or adolescent with IBD develops and maintains as-normal-as-possible peer relationships.

This enhances their emotional wellbeing and will help see them through a difficult period in their lives to come out the other side as well-adjusted, confident young adults.

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FERTILITY, PREGNANCY, AND IBD This section of The Inside Story addresses the most commonly asked questions about fertility, contraception, conception, pregnancy, and breastfeeding.

Fertility, pregnancy, and IBD IBD occurs equally as often in males and females and is most commonly diagnosed for the first time between the ages of 15 and 35. This tends to coincide with the time in life when people are becoming sexually active or are thinking about starting a family. It’s only natural then for many questions and concerns to arise about the possible impact of IBD and its treatment—including medications and/or surgery—on one’s ability to become pregnant and deliver a healthy baby.

It is important to keep in mind that despite some unique challenges, most women with IBD are able to have children and raise a family just like everyone else in the general population. The single most important element to achieving a successful pregnancy and delivery is to have your IBD under control, ideally before you attempt to become pregnant, and also throughout the pregnancy.

Does IBD affect fertility?

Because each case of IBD is highly individual and the specific needs of someone with IBD could change during the course of the disease, it’s always a good idea to raise any questions or concerns you might have with your clinical team, including your gynaecologist.

Medical and surgical treatment can be tailored to suit your own personal circumstances at any given time, including the times when you’re planning, starting, or adding to your family.

Women with IBD

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Generally speaking, IBD has no direct effect on fertility in either men or women. There are a few instances however where the medications or surgery used to treat IBD, or where the impact of active IBD on a person’s general health, can cause a temporary— and usually reversible—reduction in fertility.

It is important to keep in mind that women who have IBD but feel well, have their condition well in control, and do not require surgery need not worry about fertility or pregnancy issues.

Women who are unwell need to seek support and treatment for their symptoms.

Women who are unwell and need surgery need to discuss fertility issues with their surgeon before any procedure or operation. They also need to consult a specialist colorectal surgeon who will have experience with IBD and can address their specific concerns.

Among women with ulcerative colitis, fertility is the same as it is for women of a similar age in the general population.

Among those with Crohn’s disease, fertility is also similar to the general population when the disease is in remission but might be lower when the disease is active. Fertility usually returns to normal once active disease is brought under control. Fertility might also be reduced if the ovaries and fallopian tubes have been affected by inflammation in the intestines, or if previous surgery has led to the formation of pelvic adhesions or scar tissue. Adhesions might require further treatment to help restore a woman’s ability to conceive.

Active disease, a lack of adequate nutrition, or excessive weight loss can affect the menstrual cycle by interfering with the normal function of the sex hormones. This can result in erratic ovulation and irregular periods. When IBD is brought under control and health and nutrition are restored, ovulation and menstrual cycles usually return to normal.

Treatment with corticosteroids can also cause temporary irregularities in the menstrual cycle as well as amenorrhoea (the complete absence of periods) sometimes for months at a time. Again, this returns to normal when corticosteroid dosages are reduced or discontinued.

Men with IBD Sulfasalazine, which is one of the aminosalicylate or 5-ASAcontaining medications, is known to have a negative effect on sperm. Within two months of starting sulfasalazine treatment, sperm count decreases, the presence of abnormal spermatozoa increases, and sperm motility is decreased. All of these changes are dose-related and are reversible. This issue can be avoided by would-be fathers by switching medications at least three months before attempting to conceive, by which time their sperm will have returned to normal.

Methotrexate can also lower sperm count but this returns to normal after discontinuing the medication. Men are advised to discontinue methotrexate three months before attempting to conceive.

Severe active disease or a lack of adequate nutrition can also reduce sperm count, which usually returns to normal once the IBD is brought under control and health and nutrition are restored.

Surgical procedures that remove the rectum (for example, proctocolectomy with ileostomy or ileal pouch anal anastomosis surgery) can sometimes (but rarely) impair men’s ability to achieve an adequate erection or ejaculation.

Newer surgical techniques, however, that remove the rectum have significantly reduced the risk of this complication.

Surgery can sometimes be postponed if a couple wishes to start or complete their family, but it is always important to strike a balance between the benefits and risks of postponing or proceeding with an operation. Each IBD case is unique, and treatments are highly specialised, so it is important to have any operation discussed with the IBD team and done by a specialist colorectal surgeon.

What’s the best type of contraception to use?

Women with IBD can use any form of contraception to avoid pregnancy, including oral contraceptives or the pill.

Some evidence from clinical studies suggest that taking oral contraceptives can make Crohn’s disease worse, but it is important to note that most of the women who experienced this problem were also smokers. It is now well established that smoking increases the risk of developing Crohn’s disease and worsens the course of the disease, i.e., it increases the need for surgery and medications.

It should be noted that the absorption of oral contraceptives through the small intestine could be impaired because of disease activity and/or interaction with other medications such as sulfasalazine or certain antibiotics. During active stages of IBD, it is not unusual for the menstrual cycle to become irregular, so it’s important to be aware of your menstrual patterns. Consult your clinical team if you’re concerned about the effectiveness of your contraception or if you require further information about available alternatives.

Will IBD affect my ability to conceive?

Most women with IBD can conceive as easily as other women of the same age. If you’re contemplating becoming pregnant, however, you should consider your current state of health before conceiving. Generally speaking, the outcome of pregnancy among women with IBD is best when the disease is inactive at the time of conception.

If pregnancy occurs during a period of active disease, the IBD is likely to remain active or to worsen, and there is a greater chance of miscarriage, premature delivery, or a lower-birthweight baby. It’s also important to be aware that if medical or surgical treatment becomes necessary because of disease flare-up, your IBD would need to be treated in the same way as it would if you were not pregnant.

Although relatively uncommon, women with Crohn’s disease can develop complications involving the genital tract that can have an impact on their ability to conceive.

These complications can have a direct effect on specific genital organs, or an indirect effect by causing discomfort or intense pain during intercourse. The most common types of genital tract complications include: • Development of scar tissue, either through the natural healing process or after surgery, which adheres to the fallopian tubes or ovaries.

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• Formation of abnormal channels or fistulae between the intestine and other organs that seep faecal matter and bacteria into the connecting organ.

Fistulae that develop between the intestine and uterus cause inflammation and infection of the endometrium, on-again-off-again pelvic pain, and possible low-grade fever. Fistulae from the intestine to the vagina can result in the passing of gas and/or stool from the vagina.

• Formation of abscesses or boil-like sacs containing intestinal fluid, bacteria, and pus in and around the pelvic region.

• Development of slit-like or knife-cut ulcers on the vulva or labia (the outer lips of the vagina) which can be extremely swollen and painful and might also drain fluid. These ulcers could be tiny fistulae coming from the inflamed intestine or could also occur as numerous sores or pimples on the labia.

These complications usually resolve once the inflammation of Crohn’s disease is brought under control by treatment with medications such as corticosteroids, immunomodulators, or antibiotics.

Surgery might sometimes be needed to drain an abscess or to remove the part of the intestine causing the problem.

Will I have a normal pregnancy?

Yes, this is the most likely outcome especially if you plan your pregnancy and are in remission at the start.

But do remember that any woman can have a ‘problem’ pregnancy and having IBD doesn’t change that.

Most women with IBD have normal pregnancies and normal deliveries, in proportions similar to women in the general population. Problems during pregnancy are most likely to occur among women with active Crohn’s disease, who might experience a greater risk of spontaneous abortion (miscarriage), premature delivery, or stillbirth. If the symptoms of Crohn’s disease become severe enough to require surgery during pregnancy, the risk to the foetus could be even greater. It is important to remember, however, that these complications of pregnancy are rare— especially if you entered the pregnancy healthy and well—and that the majority of women with Crohn’s disease experience normal, healthy pregnancies.

I was medication-free during my pregnancy, and I was very proud of the job my body was able to do.

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Can IBD begin during pregnancy?

Only by coincidence and this is extremely rare. It is possible that both ulcerative colitis and Crohn’s disease can begin during pregnancy, but there is no evidence to suggest that IBD is more likely to be diagnosed for the first time during pregnancy or in the post-partum period (the first few weeks immediately after delivery).

Nor is IBD likely to be any more severe if it is diagnosed during pregnancy or during the post-partum period.

Will the medications I’m taking harm my baby?

Every pregnant woman wants to give her baby the best possible chance of being born healthy. It is only natural therefore for women with IBD to be concerned about the possible effects the medications they’re taking could have on their developing foetus.

If you are planning to have a baby, it is important for you to discuss these issues with your IBD specialist before you try to conceive, and keep yourself well informed.

Every pregnant woman with IBD needs to know if her disease is in remission, whether or not she can stop medication during her pregnancy, and what the risks are to both herself and her baby if she stops medication and experiences a flare-up during pregnancy. It might be necessary for some pregnant women to continue with their medication to control inflammation or maintain remission.

First and foremost, it is important to know that the greatest threat to conception, normal foetal development, and a successful pregnancy is the presence of active disease, not the use of medications.

The outcome of pregnancy in women with IBD whose condition is well managed is similar to that of the general population, without any increase in the number of congenital abnormalities or premature births. As always, you and your clinical team should jointly weigh up the risks and benefits of your taking versus your not taking medications while pregnant or breastfeeding, according to your own individual circumstances.

Aminosalicylates Numerous studies investigating the use of aminosalicylates or 5-ASA-containing medications have not shown any increase in adverse outcomes during pregnancy. These medications are therefore considered safe to take during pregnancy and breastfeeding. Sulfasalazine, however, is known to interfere with the metabolism of folic acid, which is essential to normal foetal development.

All women who are pregnant or who are trying to become pregnant should take supplemental folic acid to reduce the risk of neural tube defects (e.g., spina bifida) in their unborn child, and this is especially true for women taking sulfasalazine.

Corticosteroids

Biologicals

Long-term use of corticosteroids is not generally recommended by health professionals. Having said that, many decades of use of corticosteroids in the treatment of conditions such as asthma, rheumatoid arthritis, and IBD during pregnancy have not shown any increase in the risk of complications such as stillbirths, premature delivery, and spontaneous abortion, even among those who are corticosteroid-dependent. Given that the risk to the foetus is far less from use of corticosteroids than it is from acute disease flare-up, corticosteroids can be used to control flare-ups during pregnancy and breastfeeding, with every effort being made to switch to other types of medication and minimise or eliminate use of corticosteroid once the disease is under control. Infants who are being breastfed while the mother is taking moderate or high doses of corticosteroids should be monitored by a paediatrician.

Those with IBD severe enough to require biological therapy tend to relapse when treatment is discontinued. At the same time, active disease poses a greater risk to successful pregnancy than use of a biological agent. There are now several thousands of reports of successful pregnancy outcomes with use of infliximab and adalimumab without harm to baby and infants followed out to 12 months and beyond.

Note though that babies exposed to these drugs in utero must not receive any live vaccines until 12 months of age.

As always, a balance must be struck between the risk of active disease and the risk of treatment. Women taking biological treatment who wish to conceive should discuss their situation with their clinical team.

Antibiotics Metronidazole and ciprofloxacin are the most common antibiotics used in the treatment of Crohn’s disease. Both medications are generally considered safe for use during pregnancy and breastfeeding, but are not recommended if other options are available.

Immunomodulators Long and extensive experience with the use of azathioprine, 6-mercaptopurine and cyclosporin among pregnant women has not shown any increase in congenital abnormalities or adverse outcomes. The opinion is that these medications are safe and well-tolerated during pregnancy and breastfeeding and should be continued as required to control the disease.

Methotrexate, on the other hand, is known to cause congenital abnormalities and has been associated with an increase in spontaneous abortions. Methotrexate should never be used during pregnancy and should be discontinued at least three months prior to conception.

Thalidomide Thalidomide is occasionally used to treat refractory Crohn’s disease but should never be used if pregnancy is being considered.

Anti-diarrhoeal agents Anti-diarrhoeal agents should always be used with caution.

While occasional or low-dose use might be necessary from time to time, it is important that anti-diarrhoeal medications are avoided just before and during labour. See Section 6 ‘Medications in IBD.’

Enemas, foams, suppositories Although there is some absorption into the bloodstream of the active ingredients of rectal formulations of IBD medications, the amount absorbed is rarely enough to cause any problems and need not be an issue, given that oral preparations of aminosalicylates and corticosteroids are considered safe to use during pregnancy.

Is it safe to have diagnostic procedures during pregnancy?

In general, investigations involving x-rays and radiation, including CAT scans, should be avoided by pregnant women, especially during the first trimester (first three months).

They should be done however when the need to investigate the mother’s health outweighs the risk to the foetus, as when there is a disease flare-up that is not responding as expected to treatment. In this instance, MRI might be performed instead of CT, or low-dose radiation techniques can be discussed with the specialist radiologist. Regardless of the method of diagnostic procedure, supreme care must be taken to shield the developing foetus from any radiation.

If diagnostic procedures are required during pregnancy to manage disease or plan a change in treatment, the following procedures are considered safe to perform: • abdominal ultrasound • sigmoidoscopy • rectal biopsy • gastroscopy

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• limited colonoscopy (a full colonoscopy is technically more demanding in the later stages of pregnancy and could present a greater risk) • MRI scans.

Is it safe to have surgery during pregnancy?

If needed, yes it is, but routine surgery which could have been performed beforehand should not be done.

This is one of the reasons one should be proactive when planning pregnancy and to aim to spend as much time in IBD remission as possible.

Any type of surgery during pregnancy raises concerns about the wellbeing of the mother and the foetus and, wherever possible, should be postponed until after delivery. Fortunately, there is rarely a need for IBD-related surgery during pregnancy.

In some cases, though, putting surgery off until after delivery might present a significant risk to the mother.

And although any type of abdominal surgery presents risks to the developing foetus, there are also cases where the risk to the foetus would be greater if surgery was put off. As always, the risks involved with surgery need to be weighed against the danger of ongoing disease activity and the lack of response to medical treatment.

Will previous surgery affect pregnancy?

Women who have had colectomy and ileostomy tend to experience relatively few surgically-related problems during pregnancy. A normal vaginal delivery can be expected without any additional complications caused by the surgery. It is possible, however, that the position, contour, and size of the ileostomy can change during pregnancy because of abdominal swelling. A stomal therapist can advice on the use of appliances during the course of pregnancy. Sometimes it might be advisable to postpone pregnancy for one year after construction of an ileostomy to allow the body time to adapt.

Caesarean delivery will also be recommended for women who have had ileal pouch anal anastomosis surgery (IPAA) for ulcerative colitis, in order to preserve the function of the pouch and reduce the risk of pouch damage, although vaginal delivery is often possible in these cases.

Will pregnancy make my IBD worse?

No, there is no evidence of this.

The physical and emotional stresses of pregnancy or the postpartum period might cause the symptoms of IBD to worsen, or at any rate the new mother might feel worse, just as might happen at other times of stress during the course of the disease. But this in no way implies that stress causes IBD or that being pregnant worsens IBD. Doctors advise patients to take good care of themselves throughout their pregnancy, and especially during the post-partum period which can be a particularly challenging time for new parents. It is best to rest as much as possible and to arrange for home help if necessary. If your IBD does flare up during pregnancy or the post-partum period, you should contact your clinical team to ensure that the inflammation is brought under control as quickly as possible.

If I had problems during one pregnancy, can I expect the same for future pregnancies?

The short answer is no. There is no way to predict whether problems experienced in one pregnancy, such as disease flare-ups or development of complications, will occur in any subsequent pregnancies.

Do I need to follow a special diet while I’m pregnant?

The majority of women with IBD can and do have a normal vaginal delivery. This method is preferred unless there are obstetric reasons to perform a caesarean section.

No. Pregnant women with IBD should follow the same well-balanced diet that is recommended for all pregnant women, which includes items from all major food groups. Most pregnant women are advised to take a folic acid supplement and some might also require additional iron. Supplemental folic acid is especially important to women with Crohn’s disease of the ileum (last segment of the small intestine) and/or those taking sulfasalazine, as the absorption of folic acid might be reduced. Prior to conception, women with IBD should be tested for iron deficiency which is quite common in IBD but often go unrecognised unless specifically investigated.

Women with Crohn’s disease complicated by perianal fistulae and abscesses involving the anal and genital areas are generally advised not to have an episiotomy (an incision to widen the birth canal) because of possible difficulties with the healing process. In these cases, caesarean delivery would be recommended.

Depending on your individual circumstances, your clinical team might also recommend other vitamin and mineral supplements, or the addition of specific foods to your diet to ensure that you’re getting essential nutrients. If your disease is active, it might be necessary to eliminate specific foods from your diet

Women with active perianal disease and pouches will need to consider elective caesarians. This should be discussed between patient, obstetrician, IBD specialist, and surgeon.

Will previous surgery affect delivery?

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that are causing you discomfort. Your dietitian will be able to provide you with further information about healthy and well-balanced diets during pregnancy and breastfeeding.

Will I pass IBD on to my children?

In general, no. Generally speaking, your children are more likely to not have IBD than to have it. Unlike, for example, height or hair and eye colour, which are inherited directly from one or the other parent, IBD is not strictly a hereditary condition, although it does display a definite genetic predisposition.

What does this mean? It means that it is not the disease itself that is passed on from one generation to the next, but rather a tendency for the disease to develop in an individual. It is only when someone with a genetic predisposition to IBD encounters one or more still-unknown factors that the condition will ultimately develop.

It is estimated that the lifetime risk of a child developing IBD is about 9% if one parent has the condition, and about 36% if both parents have the condition. This means that a child has a 91% chance of not having IBD if one parent has it, and a 64% chance of not having it, even if both parents are affected.

The risk is not considered large enough to discourage anyone with IBD from starting or adding to a family.

And finally‌ The ability to become pregnant when desired and to raise healthy and happy children are issues many of us face when deciding to have a family. Having IBD most certainly adds to the many challenges. But, it can be done and it can be done well. Just keep a positive attitude!

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Diagnosis ‘I started showing symptoms when I was 18 and at uni,’ Katrina says. ‘At the time, I was living away from home and having a great time, studying and drinking and going out. Then I started feeling unwell.

Originally I thought it was just a lifestyle thing and I’ve just got to rest myself. But then I started bleeding from the bowel and I realised that this was serious.’

She told her mum what was happening, then went back home to Albury in New South Wales to get it all sorted. ‘We saw a specialist and I had a colonoscopy and we learned I have Crohn’s disease. I was 19.

I didn’t know anyone else with Crohn’s and I myself knew nothing about it. It took me a long time to comprehend what was happening. At the doctor’s office, we were given some printed information, then I went home and researched it some more.

‘When you’re young,’ she continues, ‘it’s really hard to be comfortable with yourself as a person. And then you get dealt with a disease that you don’t know anything about and you don’t understand why it’s happening.’

Reality Bites: Katrina’s Story Motherhood is a tough job. Doing a reality-TV program for two intensive months is a tough job. Managing a chronic illness is a tough job.

Fortunately, Katrina Chambers, who at one point had all three on her plate, is tough, too.

At 34 years old, Katrina is certainly living a full life. She’s mother to three young boys, aged 13, 10, and 9. She’s a reality-TV celebrity. And she has Crohn’s disease.

Raising a Family Katrina kept her condition from everyone except her family, and back at uni, things settled down a little bit with medication. ‘I didn’t miss any uni,’ she says.

‘I didn’t fail anything and I still got on with it. I got through all that and graduated, then moved to Wagga for a job and I’ve been here ever since.’

Things stayed manageable and life went back to normal, although she did have a flare-up soon after she married her husband, Andrew. But then she got pregnant with their first son not long afterwards, and she found herself completely symptom-free.

‘During each of my three pregnancies and when I was breastfeeding, I was better than I had ever been.’

Katrina’s sons are now 13,10, and 9—three healthy, robust boys who are aware that sometimes mum has bad days and needs to rest.

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‘They know that I have some problems with my bowel and that that’s just how I am. They also know that when I need to go to the toilet, I need to go to the toilet. They understand and I sometimes hear them tell each other, ‘Don’t go annoying Mum—she’s on the toilet!’

‘Andrew is so supportive as well. He’s just awesome.

I don’t keep any secrets from him, and he knows that on some days I just have to take it easy, especially if I’m still in my pyjamas late in the afternoon.’

Katrina from The Block Katrina was a contestant on Channel 9’s The Block, a show where contestants renovate a home and get it ready for auction. She and her sister Amie Godde worked together as a team and toiled practically nonstop for nine weeks to renovate a house, all under the scrutinising glare of the reality-TV cameras.

‘Doing the show and getting the house sold was a buzz,’ Katrina says, ‘but all that stress, coupled with not eating properly during the weeks of filming, took their toll on my health.’

She had a flare-up and dropped 10kg during filming. She lost a further 4kg since completing the show.

These days, Katrina is living a much quieter life back home in Wagga Wagga NSW, and she takes it easy whenever she can, taking everything in moderation and paying attention to what her body tells her she needs to do.

‘A couple of Easters ago,’ she relates, ‘I got myself in a bit of a situation when I ignored feeling unwell. I ended up dehydrated and had to stay in hospital for four days.’

Fortunately for Katrina, not many foods bother her. She tends to avoid bread because of the yeast, and she doesn’t take alcohol as it makes her sick. But as long as she doesn’t overindulge in rich foods, she usually has no problems.

‘I pick my battles,’ she says. ‘If I know I’m not going anywhere for the next few days, then I’ll usually eat whatever I want.

Not even Christmas is a problem. The Christmas stress doesn’t get to me. I’ve got three boys! It doesn’t get much more stressful than that.’

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CHILDREN AND ADOLESCENTS WITH IBD This section highlights the specific needs and issues that younger people with IBD can have, and the ways in which treatment choices might differ because of these considerations. In this section, the term ‘children’ will refer to any person between the ages of 0 and 18 years.

Children and adolescents with IBD IBD is often considered to be a ‘young person’s disease’ because its onset is typically between the ages of 15 and 35. It can however occur at any age; from infants right through to seniors. It is rare in children under the age of 2 years, and becomes more common from about 10 years of age.

For the most part, IBD in children and adolescents is the same as it is in adults. That is, the disease runs a similar course of remission and relapse, and the medications (in appropriately adjusted dosages) and the types of surgery used to treat the disease are similar. The symptoms of IBD also tend to be similar between children and adults, with some exceptions being that abdominal symptoms are often more severe in children and that symptoms not involving the gastrointestinal tract, such as failure to grow as expected, might appear before the onset of intestinal symptoms. Much of the information presented in other

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sections of The Inside Story: A Toolkit for Living Well with IBD therefore applies across all age ranges.

But there are also some important differences between children and adults with IBD. One major difference concerns the fact that the children’s bodies are still growing and developing.

A condition such as IBD—which can impair the absorption of essential nutrients from food and, at the same time, affect the desire to eat—tends to have a more profound impact on growing bodies.

Another important difference is that children’s minds are also growing and developing. Younger children in particular are less equipped emotionally to deal with the impact of IBD on their lives. There are also several issues quite specific to children and adolescents with IBD with regard to schooling, participation in various activities, and general socialisation within and outside the family environment. Their parents might themselves be going through a grieving process which, in turn, will affect their child’s ability with the illness.

If your child is diagnosed with IBD, it is important that you as a parent also get some support if you need help with coping, as sometimes parents have more emotional needs and stresses in these situations. When younger children get a chronic illness such as IBD, they might not know exactly what they are missing. Parents can help their children cope, but can also make them feel worse if they themselves are not coping. So if you are a parent whose child has IBD, you need to look after your own mental health so you can help your child better.

Are there any early signs of IBD in children?

The diagnosis of ulcerative colitis in children tends to be relatively straightforward. A typical early sign is progressive loosening of the stool, which often contains mucus and blood and which may or may not be accompanied by abdominal pain. Diarrhoea can develop slowly or begin quite suddenly.

Among children with Crohn’s disease, the signs can be quite vague at first, confusing the diagnosis. Common early signs are abdominal pain and weight loss or failure to gain weight, which can appear long before a diagnosis is made. In other children, loose stools and cramps-like abdominal pain might appear at the same time. The pain tends to be felt just above the navel on the right side of the abdomen and often occurs just after a meal. Pain, loss of appetite, and weight loss are also common symptoms of Crohn’s disease, which might also come with diarrhoea. The child might also feel tired and lacking in energy as a consequence of blood loss and iron deficiency.

Children will often try to avoid eating in order to prevent symptoms; this can worsen their fatigue. Sometimes, the unexplained abdominal pain, loss of appetite, and weight loss might be incorrectly attributed to allergies to certain foods, a fear of attending school, or other psychological problems such as anorexia nervosa (an eating disorder).

In other children, early signs of Crohn’s disease might be sores in and around the anal area such as fissures, fistulae, abscesses, skin tags, etc. Less often, a child might complain of joint pain and fever long before any gastrointestinal symptoms develop. In rare instances, a child might be treated for arthritis for years before any abdominal symptoms appear. Sometimes, an early sign of Crohn’s disease in a child is a failure to grow for months or even years before any other signs of the condition are present.

Do children outgrow IBD? The short answer is no. Both ulcerative colitis and Crohn’s disease are considered to be chronic conditions that more or less last for a lifetime. But many people, including children, experience long symptom-free periods because of spontaneous remission or a favourable response to the medications used to treat their condition. Also, many people who have had surgery to treat their condition experience a better quality of life when they no longer have to put up with painful and distressing symptoms or take medications to control their disease.

What is meant by the term ‘growth failure’?

Growth failure is a medical term used to describe a growth rate that is below the appropriate growth velocity (speed) for age. Important clues to growth failure includes a child noticing that he or she is shorter than other children in the same class. Parents might notice that the size of a child’s shoe or clothing has remained the same for a longer period of time than expected, or that the child is not gaining weight, or is perhaps even losing weight.

Since infancy, your child would have had a growth chart which a health nurse uses to monitor a child’s growth rate compared with the average growth rate of similar-aged children, as well as with their genetic potential based on the height of their parents. If growth failure is suspected in your child, or is indicated in the growth chart, x-rays can be used to confirm a delay in bone development.

There is no evidence to suggest that levels of growth hormone are deficient in children with IBD. Although growth might be delayed in children and adolescents with IBD, if their IBD is treated well and they go into remission, they usually catch up in time, sometimes even into their late teens and early 20s.

Exactly how does IBD affect growth in children?

There are a few different answers to explain the effects of IBD on growth in children.

Active disease can affect growth A major factor affecting growth in children with IBD is disease activity: the more severe the disease and the longer it has been active, the more growth will be delayed. About 15% to 40% of children whose onset of IBD was before puberty will experience growth failure. The most effective means of reducing the risk of growth failure is to have the inflammation of IBD under control for as much of the time as possible.

Inadequate nutrition can affect growth The diarrhoea associated with IBD can cause a loss of dietary fats and water and, if severe, can lead to rapid weight loss and dehydration. It is important to be constantly alert because children can become so accustomed to loose stools that they do not even think of them as diarrhoea anymore.

Among children with Crohn’s disease of the small intestine, the absorption of essential nutrients from food can also be

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impaired. The main reason however that children with IBD do not maintain normal growth is that they do not eat as much food as their bodies require. Children with IBD often do not feel hungry or will avoid eating in order to prevent symptoms such as abdominal pain, cramping and diarrhoea. A lack of adequate nutrition (and caloric intake) is thought to be the single-biggest reason for growth failure in children and adolescents with IBD. Children with IBD can require 50% more calories per day than a child of a similar age without the condition.

Treatment with corticosteroids can affect growth Corticosteroids—especially when taken in high doses or for long periods of time—can reduce bone mass and delays in growth and development. These effects can be minimised by taking corticosteroids only every second day and by gradually tapering the dose downwards once the inflammation is brought under control. As discussed above, however, disease activity and inadequate caloric intake are thought to be the major reasons for growth failure in children. Treatment with corticosteroids often results in improved growth because the disease is brought under control and the child is able to eat better.

Can surgery treat growth failure in children with IBD? Growth failure on its own can sometimes be an indication for surgery in children with IBD, although this is rare and would be considered only if puberty had been delayed for several years. Because Crohn’s disease often recurs in people who have had surgery, the decision to operate on children with this condition is rarely made because of growth failure alone. More often, surgery is performed because of poor response to medical treatment and/or the development of complications such as strictures (blockages) or fistulae (abnormal connections between two sections of bowel or adjacent organs or skin), combined with a failure to grow. After surgery, some children with growth failure resume normal growth while others do not. The reason for this difference is not known and it could be that some children are still not consuming adequate levels of nutrients for growth.

Does IBD affect the onset of puberty?

Will my child be normal?

When IBD occurs in children before the onset of puberty, there could be a delay in sexual development.

It is estimated that up to one-third of children with Crohn’s disease will develop more slowly than their peers. The main reason for this delay is the chronic inflammatory disease delaying puberty in the same way it leads to growth failure. Inadequate nutrition because the child tends to eat less to avoid symptoms

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such as pain, cramping, and diarrhoea can also play a role and in some cases. There could also be an impaired absorption of nutrients in the small intestine.

Although puberty might start later in some children, however, eventually they will catch up if the condition is bought under control.

Similarly, children who need to take corticosteroids to control the inflammation of IBD might experience a delay in the onset of puberty compared with their peers. This is usually managed effectively by taking the medication on alternate days and by using the lowest dose possible to control the inflammation. Although puberty could be delayed in children taking corticosteroids, eventually they will catch up and mature normally. In addition, if the steroids are effectively controlling IBD, they could actually help rather than hinder the onset of puberty.

Is there a special diet for children with IBD? A normal well-balanced diet containing a variety of items from all major food groups is the ideal diet for children with IBD. In many cases though this is easier said than done. Children with active IBD often do not feel hungry and/or will avoid eating in order to prevent symptoms such as abdominal pain, cramping, and diarrhoea. Children with IBD who also have lactose intolerance can develop uncomfortable symptoms such as bloating, abdominal cramps, and increased diarrhoea when they drink milk or eat dairy products.

This can worsen the problem of under-nutrition, as dairy products are a major source of nutrition and calories in children’s diets. Likewise, raw foods such as salads, uncooked vegetables, or fruits can further irritate an already sensitive gastrointestinal tract and worsen the symptoms of IBD.

The main priority for children with IBD is making sure they eat enough food each day to meet their caloric requirements for growth and activity. So simply getting them to eat— which means practically anything they want to eat (within reason)—is a good place to start. This can include foods such as burgers, chips, pizza etc., although these should be considered as treats, with healthier options making up the largest part of their diet just as they do for the rest of the family. It is important that food does not become the major battleground whereby the child vents his/her anger about their condition (by refusing to eat, etc.), but that other avenues are available to work through the issues.

Many children who have difficulty eating enough food or have complications such as narrowing of the intestines (strictures) could benefit from taking liquid supplements, especially of protein and calcium, to increase their caloric intake. These drinks (somewhat like smoothies) are nutritionally complete and come in many different brands and flavours that can be taken alone or as a supplement to regular food. In Europe and the UK, children with Crohn’s disease can have liquid supplements for six weeks without other food instead of corticosteroids in order to induce remission. Studies are under way in Australia to see if this method is useful for our children and to allow us to better understand how it works.

A not-uncommon issue with liquid nutritional supplements is that a child has developed an aversion to food and might initially resist taking them. A technique used to work around this problem is to administer a special formula via continuous infusion overnight. While the child is sleeping, the nutritional supplement is pumped slowly through a nasogastric tube, which is a narrow tube passed through the nose, down the oesophagus, and into the stomach. This ensures that the child is getting sufficient nutrients and calories to meet his or her daily requirements. It is even possible to learn how to use this technique at home. Oftentimes, once the first few days have passed and the child has become accustomed to being nourished, many find that they are able to drink enough of the supplement without a need for the nasogastric tube.

Some children with active IBD might become deficient in vitamins and minerals such as vitamin B12, vitamin C, vitamin D, folic acid, iron, calcium, magnesium, and zinc. Most often, these deficiencies can be detected and corrected by the child’s clinical team. Vitamins and minerals are contained in liquid supplements and are available in concentrated forms as liquids, tablets, or capsules.

If the disease is currently in remission, then children can eat a normal balanced diet along with the rest of the family.

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What if my child is too sick to eat?

Children who are very sick can be administered exclusive enteral nutrition (EEN) via a nasogastric tube.

EEN is a complete liquid diet that can also be taken orally if the child feels well enough.

In rare situations, such as gut failure, nutrients can be administered via total parenteral nutrition (TPN), which is a semi-permanent tube.

In some cases, TPN might be used to rest the bowel and to improve the child’s nutritional status and overall health. TPN can also be used to prepare a child for surgery, with many children experiencing shorter recovery periods as a result. Because their caloric intake is dramatically increased, many children begin to grow while they are being fed intravenously.

What can I do to help my child cope with IBD? No parent likes to see their child sick. It is completely normal to feel frustrated at times when you cannot simply make their pain and symptoms go away.

The best way to help your child cope with IBD is by your own acceptance of their condition. You will need to come to terms with it realistically. IBD is not preventable or avoidable. It was not anything that you or your child did or did not do that brought about the onset of IBD, so there is nothing to be gained by blaming yourself or feeling guilty. Once you accept that your child has IBD, you can move on towards identifying ways in which you can provide the right kind of support and ensuring that your lives are as normal as possible.

Try to learn as much about the disease as you can.

Ask questions of your child’s clinical team, and encourage your child to do the same. CCA provides a wealth of information about IBD and can offer support to you and your child when needed. The Internet is also a valuable source of information about newer methods of IBD management and about where IBD research is heading. Some online resources are shown in Section 18 ‘Resources and services available for people with IBD.’ The presence of a chronic disease such as IBD within the family environment can have a huge impact on family dynamics: • Parents will need to spend more time with a sick child than with other children. This can lead to feelings of resentment and jealousy, and cause constant friction between the children. If at all possible, try to avoid letting IBD become the focus of attention in your family life and make sure that your other children are receiving their fair share of your time, attention, and love.

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• Some parents become overly protective of their child with IBD. A child’s physical and emotional wellbeing, however, is best developed by encouraging him or her to participate in age-appropriate activities, just as you would do for your other children. And as soon as your child is old enough, it would be a good idea to foster independence by encouraging him or her to take responsibility for some aspects of the condition, such as taking medications or calling the IBD clinic when necessary. Many children thrive on responsibility and learn valuable life skills in the process. It is a difficult balancing act between helping children manage their condition while also fostering their development and independence. When symptoms are less severe or the disease is in remission, a conscious effort needs to be made to treat them like an average child of their age.

• If a child develops IBD at an age where the quest for independence is already a major issue (e.g., during adolescence), it can become a huge source of tension between parent and child. Parents might become alarmed when the child is in denial about the condition and refuses treatment, or is eating poorly and losing weight. This can lead to an ongoing battle of wills with seemingly no simple solution. These are all genuine concerns that need to be managed quickly and appropriately, usually with intervention by the child’s clinical team.

Psychological support for the child and/or family might also be appropriate in order for everyone to cope better with the challenges and to move forward.

Open two-way communication is the best means of identifying issues early and preventing them from escalating into major dramas. Children should be made to feel comfortable about voicing any fears or concerns they have about their disease and its treatment.

Allowing pre-teens and adolescents the opportunity to take responsibility (within reason) for their own condition can give them a sense of control and help prevent tension from arising between parent and child.

If non-resolvable issues remain despite you and your child doing the best you can, family therapy is a valuable option to consider. An expert in family dynamics can provide much-needed support to your entire family.

Above all, your knowledge about the disease and its symptoms, a calm and level-headed approach to dealing with them, together with your love and support, can have a reassuring effect on your child and on the rest of the family.

How much information should I give my child about his/her condition?

This will depend on their age, their IQ, and how well they are.

As they get better and older, you need to start preparing them for becoming responsible for their IBD themselves, just as they need to look after their own education and eventually support themselves. So talk about it, and continually assess when you need to step back and have them take greater responsibility. As a child’s comprehension increases with age, they tend to hear just what they are ready to hear. Over time, your child will likely indicate how much information he or she is ready to hear about his or her condition.

Therefore, encourage your child to ask questions and discuss any concerns with you and with the clinical team.

Answer questions honestly and frankly, as children are quick to pick up on half-truths. Stick to the facts but gauge the level of detail according to the child’s age and maturity.

Older children and adolescents have a right to know how IBD will affect their bodies and their lives. Armed with accurate information, they will be in a better position to, for example, understand the importance of taking medications, or recognise signs that complications might be developing. Younger children will also appreciate hearing the facts but might not need to know everything just yet.

For instance, they do not need to learn about the full range of possible complications of IBD, many of which will never occur.

What can I do if my child becomes depressed?

It is not uncommon for children with IBD to have episodes of depression. Especially after a period of relative good health, a relapse can make them suddenly realise that their condition is not simply going to go away. Treatment with corticosteroids can also cause mood changes which exacerbate the problem. You can help the situation by reassuring your child that the setback is likely to be temporary and by making sure that your child receives prompt medical attention if necessary. Some children will benefit from counselling by a therapist familiar with IBD. Experience has shown that depression is usually related to disease activity, treatment, or nutritional deficiencies.

Once the symptoms lessen and the child feels well enough to resume normal activities, the depression usually disappears. Again, psychological therapy might be helpful for the child, parents, and the family as a whole.

Our Champ Charli Charli is our beautiful, courageous five-year-old daughter. She was born happy and healthy, but when she was 2 1⁄2, our lives changed forever.

This is when Charli started having bloody stools after taking an antibiotic for a small infection on her finger. The paediatrician thought it was just a bacterial infection, and we went on a round of countless emergency room visits without getting a definite diagnosis.

My husband and I were confused, exhausted and frightened.

This went on for several months until we changed paediatricians, knowing we could not just give in to the ‘stomach-ache bug’ diagnosis we kept getting.

Our new paediatrician, I believe, saved Charli’s life. He took one look at her and immediately sent her in for several tests, one of which brought up a red flag for ulcerative colitis.

By this time, Charli had endured almost five months of pain and exhaustion and after a colonoscopy, ulcerative colitis was finally confirmed. And while we were upset to get this scary diagnosis, we were also relieved to finally know what was wrong with Charli.

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Charli began prednisone and then went on sulfasalazine as a maintenance drug. All was fine and life went back to normal until Charli was 4 1⁄2. Charli’s specialists were surprised that her colitis symptoms had not returned as it is most often very severe in children. We started doubting the accuracy of the diagnosis, and wondered if she was taking drugs that could be adversely affecting her small body, particularly her liver, for no reason at all.

Her specialist agreed this could be possible, so we decided to take Charli off the drugs. The worst I believed could happen was that the symptoms would come back and we would start the drugs again. Well, they did come back less than two weeks after we stopped treatment, but this time prednisone did not work to get her back into remission. We were devastated.

Charli started going downhill, and within a few months, she was very unwell.

Finally, I asked Charli’s specialist what he thinks would give her the best childhood: drugs or an ileostomy.

He point-blank chose ileostomy, and we agreed.

We understood that the more potent drug therapies could keep symptoms at bay, but surgery was inevitable down the line anyway, because of an increased risk of cancer.

Finally, surgery day arrived. We were ready and so was Charli.

The surgery appeared to go well, although the surgeon did tell us that it looked like she had ‘indeterminate colitis,’ meaning that it could be Crohn’s disease.

This was upsetting as it would mean she was not ‘cured’ as such and could continue to have problems, and a J pouch would not be possible with Crohn’s.

Charli had many complications from surgery, and it seemed at times as though every thing that could go wrong went wrong. But her little body battled everything and she was so brave throughout that she was an inspiration to us all. In the end, we simply felt that as long as Charli was getting better and was home with us, we felt could deal with anything.

Months after she came home from hospital, Charli has continued to do fantastically well.

She started kinder and although she has an ileostomy, she is no different from the other kids. She is extremely active—swims throughout summer, jumps on the trampoline, and dances up a storm. As for her parents, well, we are still recovering!

We are hoping Charli doesn’t get Crohn’s disease so that she can get a J pouch in about five years. In the meantime, she has a fantastic medical team comprising her gastro specialist, her surgeon, her stomal therapist, her fantastic school, and her teacher’s aide, all of whom have made this journey a little easier for us through their compassion, understanding, and professionalism.

We thank them from the bottom of our hearts.

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We are now filled with hope for the future and feel an immense pride in the strength and resilience of our amazing little girl, who continues to show a bravery beyond belief and who lives each day to the fullest, just as a five-year-old should!

Are there any specific issues for teenagers with IBD? Yes! And you really do need to specifically mention issues around sex, drugs, alcohol, and other serious risk issues. Just because they have IBD does not mean they will not be experimenting in those areas, and if they are on immunosuppressing drugs, the consequences for them might be dire. This can be the case with sexually transmitted diseases such as herpes, etc. There can also be issues with medication safety and binge drinking. So parents of older kids need to think and talk about these issues, especially since many paediatricians feel uncomfortable doing so.

Generally speaking, since adolescence is a time when physical appearance and acceptance by peers are particularly important, there are a number of issues quite specific to this age group. Young people often feel angry, depressed, and frustrated by repeated flare-ups of disease which might require them to have more rest and which interfere with their social activities. The self-consciousness of being ‘different’ can also lead to feelings of isolation. They might resent the bodily changes caused by the disease, or by its treatment with high doses of corticosteroids.

Sometimes young people might avoid visits to the doctor, fail to report symptoms, or refuse to take their medications in an effort to deny that they have a medical condition. In adolescents with delayed growth or onset of puberty, their short stature and lack of visible signs of sexual development can be a constant reminder that they have IBD. Of all of the complications of IBD, these seem to cause the most distress. Added to this are very real concerns— whether voiced openly or not—about the possible need for surgery and the implications that this might have on their future lives.

Wherever possible, adolescents with IBD should be encouraged to participate in normal everyday activities. To gain a sense of control over their lives, they should also be encouraged to take responsibility for managing their condition. A good relationship between a young person and his or her clinical team can be vital to achieving independence. To prevent unnecessary conflict, avoid dietary restrictions that are overly strict. Regular monitoring of growth, nutritional parameters, and bone density should reassure the young person and his or her parents that caloric intake is adequate.

Quite often, a team-based approach involving a social worker, psychiatrist, or other therapist is necessary to supporting young people with IBD. Peer-support groups are also a useful means for adolescents to share their concerns and frustrations with like-minded people. Support is also available for the parents of adolescents with IBD to help them deal with stressful issues specific to this age group, such as lack of sleep, overuse of electronic devices, alcohol, and school/work matters.

Will IBD have an impact on my child’s ability to attend school regularly or participate in sport?

The main aim of modern IBD management is for the condition not to restrict the children’s or adults’ lives.

Children and adolescents with IBD should therefore be as active as they feel like being, or are capable of being. If they feel well enough, there is no reason for them not to go to school or participate in sport. On the other hand, if they are not able to fully participate as they want, you need to talk to them and find out why. It could be due to unsuspected ongoing disease activity (which a doctor would need to assess), certain psychological difficulties due to chronic disease, or peer pressure.

Children with chronic diseases such as IBD tend to learn to accept a certain amount of pain and discomfort as normal and just get on with it, yet they are the first to realise when it all becomes too much. Children should always be

encouraged to go to school, even during disease flare-ups, although sometimes it is best to respect their desire to stay home. Forcing a child to go to school or allowing too many days at home can both lead to tension within the family.

A sound knowledge of your child’s condition and good communication can help you determine whether or not your child is capable of attending school on any given day. When young people are responding positively, they tend to enjoy the company of their peers as a distraction from their illness, so missing school can be a wake-up call for parents and the clinical team to take a more proactive or different approach to the management of the child’s condition.

Clearly, there are special considerations for children with IBD when attending school. It is best to advise teachers and school administrators (including the school nurse) in advance about your child’s condition. This will help explain absences from school, the need to take medications during school hours, any specific dietary requirements they might have, and the occasional inability to participate in certain activities.

There might also be instances where your child would need extra support in terms of making up classwork or sitting exams outside of scheduled times. Establishing a good rapport with your child’s teachers and school administrators can also help in implementing practical methods for dealing with the symptoms of IBD especially during disease flare-ups.

For example, your child should always have immediate and unrestricted access to the nearest toilet facilities, including staff-only facilities if need be.

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Some strenuous sports, e.g., soccer, rugby, etc. might cause additional fatigue because the child has become very unfit, his or her iron stores are low, or the caloric intake is inadequate. In these cases, it might be best to correct the deficiencies and try lower-impact sports such as swimming or biking to build up fitness before swapping over to a more preferred but strenuous activity. Each child is different and you will probably need to try a few different activities to find those that best suit your child.

Should other people be made aware of my child’s condition?

Whether or not other people should know about your child’s condition is best left up to the child to decide.

Since IBD is such a difficult condition to explain, and because other children can often be insensitive about such things, your child might want to protect himself or herself by not telling anyone about IBD. For the most part, you should respect their wishes. Teachers and school administrators, however, should be made aware of your child’s condition for reasons explained above.

Encourage your child to let close friends know about their IBD. This will help explain why they might not feel up to going to school some days or might need to rush off to the toilet in a great big hurry. Good friends can be accepting and highly protective if they understand what is going on, even if it is explained to them in the simplest of terms. They can also provide much-needed support during difficult times and prevent your child from feeling isolated.

What are the chances that my other children will develop IBD? IBD is considered to be a familial rather than a genetic condition, meaning that there is no definite pattern of inheritance. If you already have a child with IBD, it is possible—but not inevitable—for your other children to also develop Crohn’s disease or ulcerative colitis. Studies have shown that between 10% and 35% of those with IBD have a near relative with either of the two conditions. This percentage increases if more distant relatives are included. But even when IBD clusters in families, there is no way of predicting whether or not another child will develop the condition. For this reason, people who have IBD in the family are not discouraged from having more children.

A Tough Teen Takes on IBD My 15-year-old son Tomas started getting blood in the stool when he was around 9 or 10.

He might have been having symptoms before that, but we thought it was just a stomach bug.

We took him in for tests when he started getting blood in his stool, but there were no markers in his stool so the tests didn’t show anything. It was like that for around six months, and then it got a lot worse. That’s when he went for a colonoscopy. The doctors saw then that he had IBD but didn’t know if it was colitis or Crohn’s. After about a year, they were able to definitely say it was Crohn’s disease.

He was put on medication, including steroids for quite a while, and he had moon-face on his tenth birthday.

But Tomas is very resilient, and he doesn’t give up. He just kept dealing with it and went to school and played soccer—which he loves—and did normal things.

Once we knew he had Crohn’s disease, we told his teacher and the principal about it. We didn’t really make a big deal out of it, and it became obvious only when he was put on an enteral diet and had to take his shake at school, during morning tea and lunchtime.

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Remission and Surgery Tomas had Infliximab infusions every eight weeks, and eventually went into remission. Eventually, he built up a resistance and it just wasn’t working for him anymore.

His medications were adjusted, and a colonoscopy showed that things had gotten very severe. Eventually, he had surgery to remove his colon (large intestine).

Saving Grace Through it all, his mental health and ability to deal with this disease have been his saving grace. Going through everything has been really tough for him. He puts on a brave face and he doesn’t make a fuss, and even our family and friends had no real idea what he was actually going through, despite knowing he had Crohn’s disease. But even when it was getting very bad for him, he remained open to strategies that could make things better. Instead of going, ‘I hate this,’ he would think: ‘How do I deal with this?’ And at school, he’d focus on things like: ‘How do I get to the toilet quickly?’ or ‘How do I keep up with the work?’ He’s always focused on making the situation work.

Another example: last year, during a severe flare-up, he wanted to go on a high school ski trip, and we were thinking, ‘How would that work? What’s he going to do?’, especially without us there as support. We debated whether he should go or not. He wanted to go and didn’t want to miss out, so we asked him how he planned to deal with potential issues. In the end, we worked out strategies and a plan to help him deal with whatever happens. It wasn’t easy because he’s a teenager and he’s conscious of all these things, but it was his decision to go so he knew he had to make it work.

Now that he’s had his operation, his goal after he recovers is to go play soccer again.

That’s the good thing about Tomas. He’d rather go and do stuff than miss out, so if there’s something he knows he needs to do, even if doesn’t want to do it, he will at least try.

He looks for how things might work, and not every child does that. His level of maturity is very high for his age, and I think that comes from having to deal with IBD from a very young age into the teen years.

Our basic philosophy is: never let the disease stop you from doing anything. You can work around things and come up with a solution. It might not be ideal, but it can still be a good strategy. This way, if something potentially traumatic happens, the child will realise that it’s not the end of the world.

It’s very important for parents to mentally prepare their children for dealing with IBD. Children should learn that IBD can range in severity over time, and that there’s a cycle of remission and active disease. If you are a parent, do not underestimate your child’s ability to learn and adapt, and focus on building up your child’s confidence and resilience in dealing with the ups and downs of this lifelong disease. But most of all, work with your child to develop strategies for coping with the rough times and enjoying the good times.

Will my child have a normal life?

Most people with IBD have a normal life expectancy and enjoy a full and long life, with a rewarding mix of family, career, and social activities. There is no doubt that the diagnosis of a chronic disease such as IBD will come as a shock to a child and the family. But while some children will experience a more serious course of illness, others will have only mild symptoms. There is no need to automatically assume that your child’s condition will be the worst. With the help of treatment, including medications, nutritional therapy, and surgery where indicated, most children with IBD can lead normal lives. Their expectations for their future— including career, relationships and family—should be the same as for anyone else.

Most importantly, when they are feeling well enough, children with IBD should be encouraged to just be normal: go to school, participate in activities and sport, socialise with friends so they are not isolated from friends and other family members. Children are adaptable and, for the most part, highly positive. Your love, support, and encouragement will go a long way in ensuring that their lives are as normal as possible and do not revolve around IBD.

Even the way he carries himself in public is very casual and mature. During the ski trip, for example, they stayed in dorms and he had to go to the toilet a lot. I asked him what he did when the others started asking questions, and he said he just shrugged it off. And they get their cue from that; they didn’t make a big deal of it because he didn’t.

‘Don’t Let the Disease Stop You’ One thing that’s helped us is being open and talking to people we trust, who can then give us, especially Tomas, support through understanding. After all, how can others help you or your child if they don’t know or understand what’s happening? Tomas has gone through enough to know he can deal with things, but it helps him enormously to know he’s got the understanding and support of everybody around him, including at school, which in turn builds his confidence.

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EDUCATION AND IBD The school years often present challenging times for students and families. This can be compounded considerably when the student has a chronic illness such as IBD. To get the most from their schooling, students with IBD need to have ongoing and coordinated support from their families, schools, and clinical team.

Education and IBD There’s a wide range of services in place in Australia to help schools effectively support students with a chronic illness, although the availability and extent of these support services will vary in different regions of the country.

The importance of engaging the school community right from the outset as an active partner in the support of a young person with IBD cannot be emphasised enough. Involvement by the school can help the student adjust to IBD and make his or her life as normal as possible. Poor adjustment, on the other hand, could lead to: • difficulties completing work on time or taking part in exams • decreased academic performance • difficulties maintaining relationships with school friends • difficulties participating in school activities (e.g., physical education or excursions) • feelings of lack of confidence or lack of motivation • low self-esteem or issues relating to body image

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Students with IBD should always aim to minimise their time away from school. Two main ways to go about achieving this goal are: 1. Students and families need to work together with their clinical team to schedule flexible visits for routine appointments, e.g., during school holidays. During school terms, early morning or late afternoon clinics can often be scheduled. If the IBD service that the student usually attends does not offer early morning or late afternoon clinics, that the student and/or family can write a letter to the hospital requesting such a service. For students in country regions of Australia, a combination of shared care with a local GP or gastroenterologist in between major hospital visits can mean less travel and improved wellbeing.

2. Optimal self-management of IBD often enables the student and his or her family to predict the onset of a relapse and possibly minimise its impact. Optimal

self-management involves maximising nutrition in children and adolescents with IBD by ensuring an adequate supply of calories, calcium and vitamin D and by treating iron deficiency as necessary. Prompt and early communication with the IBD clinical team is also essential if the student’s condition appears to be deteriorating or is failing to improve as expected.

With vigilance and good management, students with IBD can avoid missing school days often because of illness or hospitalisation, which can make them feel different from their peers. The goal of optimal treatment is to ensure that the student has normal everyday experiences and opportunities, including school attendance and personal development.

The family and school (generally with the year-level coordinator or homeroom teacher as the nominated person) need to work together to support a student with IBD. To achieve the best outcome, it is vital to establish and maintain good communication and cooperation. The best ways that this can be accomplished are to: • Share information • Develop a care plan • Keep up good communication.

Each of these topics is discussed in more detail below.

Share information IBD is a complex and highly individual condition, It is therefore important that the student’s particular needs are discussed openly and candidly with the school principal, year-level coordinator, homeroom teacher, and/or school nurse in a face-to face meeting soon after diagnosis.

Depending on the extent of illness and the issues at hand, e.g., provisions for camping trips or special considerations for major exams etc., it will be useful to involve the health professionals responsible for the student’s care in such discussions from time to time.

The extent of information that needs to be shared with other members of the school staff, classmates, and the wider school community is best left up to the student and the family to decide. The key is to strike the right balance between ensuring that the student receives adequate care and support for their condition when at school, and their right to confidentiality and privacy. It is important to work out who will be responsible for passing on the information to relevant parties. For younger students, the parents or carers will initially take on this role. Older students who have developed a good connection with their lead teacher might choose to deal with this issue themselves or in conjunction with their lead teacher.

Develop a care plan An awareness of the symptoms of IBD and the impact the condition might have on a student’s life can help schools implement a care plan that allows a young person to enjoy and get the most out of all aspects of school life.

A school-based care or management plan should be developed in consultation with the student’s family, school, and clinical team. The plan should be accessible to all relevant staff and should be reviewed whenever there is a significant change in the student’s condition or treatment. It is important to ensure that all relevant information is communicated to casual teachers and other staff who might have occasional care of the student.

The main issues to take into account when developing a management plan are: •A ccess to toilets. It is helpful for the student to sit close to the classroom door and is allowed to leave and return to the room discreetly and without question. Access to staff toilets should also be considered if communal bathrooms are locked at certain times of the day.

•M edications. Prescribed drugs might need to be taken during school hours. The care plan should include precise information about the medications, including when and how they are to be taken.

•E ating and drinking between breaks. Dietary requirements should be taken into consideration, especially if the student has to eat during class times. This could involve the student needing to eat small amounts of food regularly, sometimes supplemented by liquid meals.

•F eeling unwell at school. Pain and exhaustion can affect concentration and reduce academic performance.

Teachers should allow the student to decide whether or not to remain at school if feeling unwell, but also need to take into account whether someone will be at home should the student wish to leave school. A brief period of rest or a prescribed painkiller can enable the student to carry on until the end of the school day or at least until a responsible person is at home.

•E xercise. Strenuous physical exercise can cause joint pain or trigger an urgent need to go to the toilet. It is often best to treat the student as normally as possible as regards exercise, while still allowing him or her to decide just how much physical activity is possible on a given day. Having said that, it is also important to encourage the student to participate in exercise/sport as much as possible for their own physical and mental wellbeing. Many young people with IBD can become quite unfit after a flare-up of disease and might need six weeks or more to regain a reasonable level of fitness. High school sports teachers are often excellent in the role of coach, and can set out a gym program involving stationary bikes, treadmills, and rowing machines designed to build muscle fitness and increase confidence. It is not uncommon to encounter other young people recovering from injury or disease engaging in the same activities, so there is always a chance for some group fun!

•E xcursions. Going on trips outside school can present difficulties for a young person with IBD if there are limited (or no) toilet facilities readily available en route or at the destination. In addition, bottled water would need to be taken along if the water source at the destination is outside

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the town water area. Some practical planning well in advance will ensure that the student’s needs will be met while still ensuring that he or she does not miss out on important social and educational activities.

• Tailor the curriculum. For many students with IBD, a major issue is coping with the volume of work set out in a curriculum. A care plan should include an ongoing ‘triage’ of school work that it is divided into essential, less essential and non-essential components. The lead teacher (usually the year-level coordinator) should engage with other teachers (including the sports teacher) to achieve a manageable volume of work for the student based on specific circumstances at a given time. Simply giving a student extensions in order to complete school work is usually not enough as it can often add to the pressures he or she is already facing.

When a student is going through a bad patch of illness, a lesser volume of work should be set out until the condition improves. Tasks may need to be broken down into smaller manageable parts with interim (but flexible) deadlines set out to complete the work. For subjects such as languages, maths, sciences, etc. that usually need daily attention in order to keep up, CDs or various online applications could be useful.

Keep up good communication It is imperative that the school and family maintain regular communication so that each party is fully aware of how the student is coping at school and at home— academically, socially, physically, and emotionally.

A combination of face-to-face meetings and regular e-mail is a good means of maintaining communication among student, school, and family. Once again, the year-level coordinator is generally in the best position to set this up. If it happens that communication is less than what is desired, has fallen over, or is not happening at all, the student and family need to discuss the issue with the school at the first available opportunity so that all relevant parties are brought into the loop and lines of communication are implemented or restored.

When a student misses a lot of school because of illness, the parents and lead teacher will need to work together to reduce the impact this will have on the student’s school work and social life. If the student is well enough to study at home but not quite ready to attend school, it is best to keep up with school work so as to not fall too far behind.

Establishing e-mail contact with the lead teacher and school friends is a good way to receive and/or send school assignments and generally keep in touch with the school environment. Parents should always be copied in on e-mails pertaining to school work (students are usually OK with this) to ensure that everyone is on the same page.

And finally…

Despite the numerous challenges that having IBD present in a young person’s life, many are able to go on to study at university and other tertiary institutes.

Tertiary-level students with IBD can approach the National Disability Coordination Officer (NDCO) Programme under the federal government’s Department of Education and Training.

According to the information on the department’s website, NDCO ‘works strategically to assist people with disability access and participate in tertiary education and subsequent employment, through a national network of regionally based NDCOs. ‘The NDCOs work with stakeholders at the local level to reduce systemic barriers, facilitate smooth transitions, build links and coordinate services between the education, training and employment sectors.’

Visit the NDCO website at www.education.gov.au/ndcoprogramme for more information.

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TRAVELLING WITH IBD Whether you are going on a short trip or off on that dream holiday, travelling with the unpredictability of IBD can present special challenges. But with planning and knowing how to reduce the chances of encountering problems, you can enjoy your holiday to its fullest extent.

Travelling with IBD If you are planning an extended trip, it would be a good idea to discuss travel plans with your gastroenterologist or clinical team. Ask for a written summary of your condition that includes a list of your medications (generic and brand names), results of any recent investigations, and a management plan that informs you (or another doctor) what to do in the event of a flare-up.

Always take your doctors’ details with you, including contact numbers and e-mail addresses. If possible, see if your doctor can recommend an appropriate contact (name and phone numbers) in the area/s that you will be visiting.

Insurance

Immunisation

As the passport office states: ‘If you can’t afford travel insurance, you can’t afford to travel.’

You might need to obtain certain immunisations before you start your journey, depending on where you are planning to travel. It is best to discuss this with a travel-medicine specialist who can provide up-to-date requirements for your specific destinations. You should plan this consultation at least eight weeks prior to travel to allow time for vaccinations to take effect and to deal with any possible side effects before you leave.

Make sure to arrange travel insurance before you purchase your tickets. That way, if you happen to become ill prior to departure, your travel insurance should cover any cancellation fees. Be aware that not all insurance companies provide cover for pre-existing medical conditions, and those that do still apply a number of exclusions or have excess charges and higher premiums. If you already have private health insurance, start with your own health fund to determine the level of cover you will have when you are out of the country. You might need to amend your current policy or look for alternatives that provide cover should you require medical treatment abroad or have to return to Australia for medical treatment before the scheduled end of your trip.

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Be sure to inform your travel-medicine specialist about all the medications that you are taking as some vaccinations (live vaccines) are not compatible with the medications used to treat IBD. It is not yet fully understood whether those taking medications that regulate or lower the immune response such as corticosteroids and azathioprine respond to live vaccines in the normal manner. In this situation, it is necessary to discuss the risks of stopping the medication versus those of not being vaccinated.

Travelling and accommodation When travelling by air, see if it is possible to request an aisle seat close to the toilets, either when making your reservation or at some point closer to your departure date. Some airlines might charge an extra fee to make such arrangements for you.

If you have any dietary restrictions and will require a special in-flight meal, be sure to notify the airline or your travel agent well in advance.

Travelling by bus can be more challenging, and it is best to know beforehand whether or not the bus has an on-board toilet. If not, find out how many toilet stops the bus will make during the journey.

You can read about restrictions on www.humanservices.gov.au Remember to keep your medications in their original containers and to bring along a copy of your prescription.

This will allow Customs to confirm that the medications were indeed prescribed for you. Where possible, pack medications in your hand luggage to reduce the risk of loss or delay in transit. Note too that some non-prescription medications cannot be brought into some countries; have your doctor list these and check restrictions relating to the country of your destination.

When travelling by car for an extended distance, plan your trip along major routes wherever possible as these are more likely to have a number of toilet facilities. For many larger cities, it is often possible to obtain information about toilet locations via the Internet.

Wherever and whenever you travel overseas, it is always a good idea to check the requirements of your destination countries regarding injectable prescription meds to avoid problems. For instance, Japan requires a special permit for travellers to bring in injectable drugs (which could include the biologics used for IBD). Consider checking requirements with the relevant embassies before you travel.

It is also a good idea to bring a few rolls of toilet paper along with you just in case any of the facilities you use throughout your trip are out of paper. You should also consider bringing a small kit containing toilet paper, moistened wipes, or anything else that will help you during emergencies.

Current travel restrictions regarding hand luggage state that: ‘Containers of liquids, aerosols or gels in your carry-on baggage must be 100 millilitres or less. All containers must be sealed in a transparent, one-litre plastic bag. You are allowed only one plastic bag.’

If you are planning to travel on a budget or visit places that are slightly off the beaten track, try to enquire in advance about the toilet facilities available at your accommodation.

Even in major cities, it is not unusual for budget hotels and hostels to have shared bathrooms or to have facilities located on a floor other than the one your room is on.

Although prescribed medications are exempt from current hand-luggage restrictions, you will need to supply the appropriate documentation as discussed above.

I’ve travelled to various destinations and they’ve been safe for me. In my travels, I have learned to become savvy in locating toilets!

Medications Where possible, take enough medication with you for the entire trip plus a little bit extra to cover for any delays.

This should include regular maintenance medications, any medications required for flare-ups, and any appliances that you might need during that trip. Your doctor can write ‘REG24’ on a prescription which will allow you to pick up several months’ supply at once.

Current customs regulations restrict passengers from travelling with more than three months’ supply of medication. If you are planning to travel for longer than three months, you can obtain further information from the Australian Customs Service website at www.customs.gov.au Medicare Australia also has an information line to answer your questions about travelling overseas with PBS medicines.

The PBS Medicines enquiry line is 1800 500 147.

Should you require any additional prescribed medications while you are away, be aware that you might not be able to get all your medications in some countries. You should check this out before you go, and ask your doctor or travel-medicine specialist for the names of any alternative medications if required.

Keep in mind that when travelling in other countries: • you might have to pay for the full cost of your medications, especially in a country that Australia does not have Reciprocal Health Care Agreements (RHCA) with • an RHCA country can still deny access to some medications, especially the expensive biologics • travel insurance is not going to cover routine supply of medications.

Some medications need to be permanently kept in a strictly controlled environment with a cool temperature. Check with your pharmacist whether any of your medications and/or supplies require special transport or storage arrangements.

Food and drink Anyone who travels to an exotic location or developing country is at increased risk of experiencing travellers’ diarrhoea (gastroenteritis), an intestinal infection caused by bacteria, parasites, or viruses present in contaminated food or water. Taking measures to avoid this risk is especially important for those with ulcerative colitis or Crohn’s disease in order not to aggravate an already sensitive gastrointestinal tract.

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The rule of thumb when travelling to exotic or developing countries is: ‘Boil it, peel it, or leave it!’

More specifically, some useful advice to follow while travelling is to: • avoid ice, fresh juices, iced tea and salads • avoid re-heated foods, uncooked foods such as shellfish, and any food from street vendors • choose only fruits and vegetables that you can peel yourself • drink only bottled or mineral water, or water that has been boiled or disinfected; use this water to brush your teeth and prepare food • be careful when consuming dairy products; boil unpasteurised milk • bear in mind that too much alcohol or spicy food can disturb normal digestion.

What to do if diarrhoea hits Despite taking all the best precautions, some people with IBD will develop gastroenteritis or experience a flare-up while travelling. It is important to identify if the diarrhoea has been caused by an infection or is a flare-up of disease.

Treating infective diarrhoea with the wrong medication such as corticosteroids could potentially make the condition worse. Generally speaking, if you get struck by a sudden onset of watery diarrhoea, most often accompanied by nausea, the probability is that you have caught a bug. In this situation, you should drink plenty of fluids. Re-hydration formulas can help to restore your electrolytes. At this stage, you should not take anti-diarrhoeal medications. The gut is trying to rid itself of the infection by irrigating itself.

Anti-diarrhoeal tablets slow the gut down which causes the bug to stay in the gut for longer.

Symptoms should settle after 24-48 hours. If they persist, you should consult a doctor immediately.

On the other hand, a flare-up of IBD usually has a more gradual onset. If you are able to identify the onset of a flare-up, you should follow the management plan recommended by your gastroenterologist.

Should you develop any of the following symptoms whilst travelling, you must get medical attention immediately: • high fever, shaking and chills • profuse bloody diarrhoea • severe abdominal pain and/or distension • fainting, dizziness, and concentrated or reduced urine.

Many doctors recommend that you travel with a course of antibiotics such as metronidazole. Antibiotics can be used to treat infection and, in some cases, treat a flare-up of IBD symptoms.

Other sources of information Some useful travel health websites that you can visit for further information include: • Australian Department of Foreign Affairs and Trade (www.smartraveller.gov.au) • Travel Clinics Australia (www.travelclinic.com.au) • Travel Doctor – TMVC (www.tmvc.com.au) • Travel Health Advisory Group (www.welltogo.com.au) • Travel Health Care (www.travelhealth.com.au)

Bon voyage!

There is no doubt that IBD presents a number of challenges for anyone wishing to travel. But the key to success lies in the preparation. The advice and recommendations provided here can help ensure that your travels are as enjoyable and event-free as possible. Above all, have a great trip!

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enough. I got malaria twice and cerebral malaria once.

I broke my foot, tore a ligament in my arm, got attacked by a cheetah, and got into an argument with a monkey in a hotel room. I’m very accident-prone!

It was in Africa that I met someone who was originally from Australia, and we were very like-minded and together we decided to start mmMule in Sydney.

Creating mmMule and AngelMule is my way of creating change in the world and that’s what drives me. I think if I just had a regular job I wouldn’t be able to cope. I’m strongly motivated because I know that I’m striving for more and everything that I’m doing in life is about making other people’s lives better.

Ninety percent of what I do is about giving and educating and empowering other people. It’s what I’m passionate about and I really can’t stress how fulfilling that is. Even when you’re having a really rubbish day, it helps to remember that there are a lot of people who are struggling even more and you should be doing something to help them.

In practical terms, I cope by staying as healthy as I can.

For most of this year, I didn’t drink. I drink now but I don’t drink much.

I meditate as well, which is really good for me. I also make sure I give myself enough downtime. I don’t have a television at home. What I do is either meditate or read during my downtime. It’s tough to balance it all, but for me, having a fulfilling life keeps me going on the really bad days.

Avis Flies High My journey with Crohn’s started a couple of years before I was diagnosed in 2005. I was 25 and in the middle of a very active life, being out and about and keeping really busy. But I’d been sick for a couple of years, and my doctors just kept saying it was IBS. One day I decided I’ve had enough and I demanded to see a specialist. Literally, I was at the specialist for just five minutes before she said I’ve got Crohn’s disease. The diagnosis actually came as a relief because finally I knew that there was something wrong.

What I can say to others with IBD is: it’s not all good, but it’s also not all bad. Don’t be afraid to have bad days. If you try to block out the bad days, it will just manifest itself as stress or depression or worse.

It’s about being very much in tune with your feelings.

What drove me out of depression last year is the thought that there are some things bigger than myself that I’m striving for.

I have these big dreams that I’m going to change world—one person’s world, or empowering others to change their own world. This optimism gets me through, as well as knowing that I still have big things to achieve ahead of me.

I was put on immunosupressants and steroids. I wanted to stop the steroids when I went to Africa, but my doctor insisted I stay on them while I was there. So I stayed on steroids all the time I was there, over a year.

My doctor told me I was mad when I said I was going to live in a rainforest. But I went anyway.

I’ve always enjoyed challenges, and this was a big challenge for me. The funny thing is that I think I was less sick when I was overseas. When you’re living over there you have a very simple life. I live a very healthy life anyway, and while I was there, my body was busy fighting off other infections, funnily

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PRIVATE HEALTH INSURANCE AND IBD This section contains general information about private health insurance in Australia. The aim is to help you to gain a better understanding of the things you will need to consider when taking out private health insurance for the first time or upgrading your current policy, as well as understanding your rights as a consumer.

Private health insurance and IBD There are around 35 providers of private health insurance in Australia and all offer different levels of cover and benefits. It is important that you compare the funds carefully and read the fine print to make sure that a policy truly meets your specific needs.

The Internet is a valuable source of information about health insurance and can help you identify the most suitable providers. After doing some initial research, you should make a short list of potential providers and then discuss your needs with them directly (by telephone or in person) before deciding on a policy that is best for you. Remember, if you have IBD or another chronic illness that you fail to mention when arranging private health insurance, your policy could be deemed invalid when you need to make a claim.

Can I get private health insurance with IBD? A health fund cannot refuse to insure a person simply because of a chronic disease such as IBD. The law stipulates that health funds are not allowed to refuse membership to anyone on the grounds of health status, age or previous claims history. They can however impose waiting periods for those with pre-existing ailments.

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What is a pre-existing ailment?

According to the Department of Health and Ageing website: ‘The National Health Act 1953 specifies a pre-existing ailment as an ailment, illness or condition, the signs or symptoms of which, in the opinion of a medical practitioner appointed by the health fund, existed at any time during the six months prior to the member joining a hospital table or upgrading to a higher level of cover.’

The decision about whether or not your condition is pre-existing is made by the health fund. The health fund will need at least a week to advise you of your status.

In view of these conditions, bear in mind that: • If you are taking out health insurance for the first time, you need to be aware of their assessment of your condition before you choose a fund, as this could have a bearing on your final decision. Be sure to discuss this issue with each of the potential providers on your short list.

• If you already belong to a health fund and are planning to upgrade to a higher level of cover, you will also need to know their assessment of your status. Be sure to discuss this issue with your current provider before using health-care services such as visits to specialists, admission to hospital, etc.

How long is the waiting period?

If you became ill prior to applying for private health insurance, you will need to serve a pre-existing ailment waiting period before you are covered for any treatment associated with your illness. This waiting period is usually 12 months, but you should check this timing with the various providers before making a decision about which fund to choose.

Points to consider when taking out private health insurance It is important to do the research and compare the benefits offered by the various health insurance providers before you decide on a policy that is right for you.

Some points to consider when taking out private health insurance: •T he waiting period that applies before you can make a claim or qualify for a higher level of rebate for services, especially for a pre-existing illness.

• I s a lower premium because of a lower rebate? A policy with a lower premium could mean that you will need to make a greater initial payment if you submit a claim, i.e., pay a higher excess. Also, your policy might provide reduced rebates or no rebate at all for certain medical conditions.

•P referred providers. Some policies restrict the choice of doctor or hospital. If your preferred health-care provider/s is not on the fund’s provider list, the fund might offer a lower rebate and/or charge you higher premiums.

•T he gap between treatment fees and the insurance rebate. Before you agree to any treatment, you should seek information from your doctor and/or hospital about any additional fees that will be charged. You should also ask about fees for any other doctors who will be involved in your care. As part of its informed financial consent campaign for doctors, the Australian Medical Association (AMA) has prepared a list of questions about costs that you can ask your doctor before you go to hospital. See the AMA website at www.ama.com.au. Make sure that you also check your level of cover with your health fund.

Where do I start?

Australian Government Department of Health and Ageing The Australian Government Department of Health and Ageing provides information about private health insurance for consumers, including advice about lifetime health cover and rebates and a list of frequently-asked questions about private health insurance. Visit their website at www.health.gov.au and search for ‘private health insurance’ to get relevant information.

T: 1800 020 103 (freecall) www.health.gov.au

iSelect Another useful source that can help you to choose a suitable private health insurance policy is the iSelect website at www.iselect.com.au. Here you can compare the levels of cover and benefits offered by several major health funds in Australia based on your age, gender and individual health needs. To start the comparison, you need to work your way through a short series of questions via the ‘Start Comparing’ search engine located on the home page (it takes only minutes). You will then be presented with a number of options that best match your needs. This is a quick and easy method of identifying a short list of potential providers.

Note: The list of participating funds on the iSelect website does not include all health funds available in Australia. In addition, not all policies offered by the participating funds can be compared, but only those that the funds wish to offer through iSelect; this ‘Approved Product List’ can vary from time to time. Not all participating funds can be compared when recommending a policy.

T: 13 19 20 (9am to 6pm AEST time) www.iselect.com.au

Private Health Insurance Ombudsman (PHIO) The PHIO manages a website at www.privatehealth.gov.au.

Here you can search for and compare selected features for all private health insurance products offered in Australia.

You will also find general information about private health insurance. The website allows you to: • Search the database to review your current policy or choose a new one • Print one-page statements (called SIS – Standard Information Statements) outlining the key features of any health insurance policy • Check to see if your local private hospital is covered by your insurer using the ‘Agreement Hospitals’ search.

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PrivateHealth.gov.au If you are getting insurance for the first time, www.privatehealth.gov.au will help you ask pertinent questions—and get some answers—before deciding on the right insurance cover. These questions include: • Who is going to be covered by the insurance?

Will it just be you? Will it be for you and a partner, or will you have dependants as well?

If you have a problem with your health insurance arrangements, (e.g., you feel you have been treated unfairly or are unhappy with the service and information provided by your health fund), you should first discuss the issues directly with your health insurance provider. If you are unable to resolve your complaint, have not received a response from your fund, or need additional advice, you can contact the Ombudsman’s office directly at:

• What is covered? You have to very carefully consider what type of medical cover you will need, especially in light of your IBD. Hospital cover will be a major consideration.

T: 1800 640 695 (complaints hotline; free call anywhere in Australia)

• How does private cover work? You will most likely need hospital and general treatment, which you can buy separately or together, and this will affect what you can claim and how much you can claim.

What are my rights as a consumer?

• What government incentives and surcharges will affect your insurance? For instance, the Private Health Insurance Rebate is a government subsidy that will cover part of your insurance.

APRA is responsible for the prudential supervision of private health insurers, a responsibility that was transferred from the Private Health Insurance Administration Council (PHIAC) on 1 July 2015.

T: 1300 737 299 (9am to 5pm Monday-Friday AEST time)

Visit APRA’s web page on private health insurers and the private health insurance industry at http://www.apra.gov.au/phi/Pages/default.aspx to get information on prudential framework, register of private health insurers, and statistics relating to the industry.

www.privatehealth.gov.au

Where can I go for help if I have a problem with my private health?

The PHIO provides an independent service to help consumers with health insurance problems and enquiries. Any complaints must be about a health insurance arrangement. The Ombudsman’s office also deals with complaints from health funds, private hospitals, or medical practitioners, and publishes reports and consumer information about private health insurance. Visit their website at www.phio.org.au

www.phio.org.au

Australian Prudential Regulation Authority (APRA)

Consumers’ Health Forum of Australia The Consumers’ Health Forum (CHF) is a national peak organisation providing a voice for all health consumers.

The CHF’s strategic direction is set by its voting members. These voting members include consumer organisations representing a broad range of health consumers such as illness groups, disability groups and specific population groups such as youth, older people, and women. www.chf.org.au

How can I contact the registered health funds?

Contact details for health funds in Australia can be found in the Yellow Pages under the category ‘Health Insurance.’

The APRA website also contains information about all registered health funds in each state of Australia as well as all available contact details for each fund.

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LIVING WELL WITH IBD In this section we provide several tips that will help you live well with IBD. Some of the tips are practical things that you can do to make your everyday life just that little bit easier; others are bigger-picture issues that might help you to see your future for all that it can be.

Living well with IBD There is no doubt that IBD can have a major impact on one’s daily life. Abdominal pain and cramping, frequent diarrhoea, and extreme fatigue can make it difficult to just get on with things. Among those with Crohn’s disease, complications such as fissures, fistulae, and abscesses can add greatly to the overall discomfort and distress of the condition. Given all these, it is only natural to feel overwhelmed and at times frustrated that your life cannot be as normal as everyone else’s.

Fortunately, the treatments available for IBD make a huge and positive difference in improving quality of life. Effective treatment with medications and, where necessary, surgery can reduce or relieve symptoms and induce and/or lengthen periods of remission, vastly improving the daily lives of those with IBD. Treatment aside, possibly the single biggest factor influencing the impact of IBD on daily life is your attitude towards the condition. Most people with IBD—including those with more severe disease— can and do live full and productive lives that include career, family, travel, etc. You must choose to be one of them! There will be physical and emotional setbacks along the way. Disease flare-ups and the constant (but necessary) routine of taking medications even when you are feeling well can truly wear anyone down.

But a positive can-do attitude can be your best ally during good times and especially during those not-so-good times.

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Accept The first step in developing a positive attitude towards living with IBD is to learn to accept your condition.

It is only human to wonder at first ‘How and why did I get this disease?’ or ‘Could I have done anything differently to prevent the disease?’ You’ll need to come to terms with the fact that there are no specific answers to these questions. IBD is neither preventable nor avoidable. It was likely caused by a combination of genetic and environmental factors that triggered a super-active response in your immune system.

Once you realise that there is nothing to be gained by blaming yourself or your family for the condition, you will have taken the first step towards acceptance.

And once you have accepted your condition, you can begin to identify ways in which you can control it so that it does not control you.

Live life!

There will be times (e.g., during disease flare-ups or post-surgery) when it might feel next to impossible to drag yourself out of bed or off the couch, never mind out of the house. The trick is to avoid thinking that you will do stuff when you feel better or are not so tired, as this can eventually turn into a habit and a way of life. Continuing to connect with the outside world as best as you can and as often as you can will help you to maintain a positive outlook.

And once you get that first foot out the door, you will most likely begin to realise that it is not as difficult as you imagined it to be. During difficult times or during disease flare-ups, you might find the following tips helpful: • Whenever possible, get out of bed, have a shower, shave, brush your teeth, wear ‘outside’ clothes, and get ready to face the world. You will instantly feel better and be more willing to venture outdoors or receive company.

• Make the effort to go to work or to school, even if only part-time.

• Maintain contact with family and friends. Their various escapades and experiences can provide interesting diversions to your own situation and help you maintain your sense of humour. It will also keep you from feeling isolated.

• Read the newspapers, watch the news and current affairs shows on TV, go shopping, go to the cinema, or attend events in your neighbourhood. Staying in touch with the outside world will keep you interested in life and interesting to others.

Crohn’s has really made me cherish life, appreciate all the good things, smile, love, and just live every day. So never give up.

Chase your dreams.

Eat well The importance of a nutritious and well-balanced diet cannot be emphasised enough, especially for growing children. A good diet will give you energy and lessen the fatigue that often accompanies the active stages of IBD. Building up your body’s reserves of nutrients will also keep you in better physical and mental condition to cope with the down times, increasing the effectiveness of treatment.

• Aim to eat a well-balanced diet that contains a variety of items from all major food groups. This includes protein, carbohydrates, dairy products and ‘good’ fats and oils.

• Try eating smaller more frequent meals instead of a few larger meals.

re-introduce them one at a time to see if you are now able to tolerate them. It is very important to maintain a healthy, well-balanced and varied diet. If you are avoiding many foods or finding that there are several foods that seem to trigger your symptoms, see a dietitian to ensure that you get all the essential nutrients you need.

• A dietitian can also help if you are not tolerating fibre well or otherwise need a personalised diet.

• The combination of diarrhoea and loss of appetite can greatly increase the risk of dehydration. Make sure to drink plenty of fluids, especially water, and especially in warmer weather.

• Parents: During active stages of your child’s disease, you might need to make concessions concerning the type and quantity of food he or she eats. The most important thing is to ensure that your child is getting an adequate number of calories each day to maintain growth and development, especially during puberty.

•K ids: Try to not fight with your parents about food.

There might be times when you do not feel like eating or suddenly dislike certain foods. But always remember that you need a good diet containing meat, fruit, veggies, and dairy products in order to help you grow and mature normally. Your parents are trying their best to help you.

For more information, see Section 9 ‘Diet and nutrition in IBD.’

Exercise your body IBD can affect on your physical fitness. Treatment with corticosteroids can affect your bone and muscle strength, surgery can affect your abdominal muscles, and overall poor diet and impaired absorption of nutrients can leave you feeling weak and lethargic.

Exercise is a quick-fix solution for mind, body and soul.

It is often free, usually fun, raises the endorphin levels in the brain, and lifts your mood. And as long as you stay sensible, it could be the best activity for you.

There are many wonderful places for exercise and physical activity, but to avoid the nightmare of being stuck somewhere miles away from home and desperately needing to relieve yourself, look for options that will allow you to access a toilet with minimal fuss and disruption.

Some examples are: • an exercise class in your local community centre/shopping centre • an aqua-aerobics class in your local swimming pool • a gentle exercise program offered by your local gym; weights are especially good for toning muscles and increasing strength.

• Keep a diary to track any foods that trigger your symptoms and then eliminate these from your diet during active stages of disease. Once you are feeling better, you can

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If you feel comfortable venturing a little farther afield, consider— • walking the dog • riding a bike along the cycle paths • strolling on the beach • taking short nature walks.

—but make sure to scout out the location of loos beforehand so that you are always prepared should the need arise.

Incidental exercise is also a simple and easy means of incorporating activity into your daily life. To put it simply, incidental exercise is a method of doing exercise as part of your normal daily routine.

• Walk, not drive, to the neighbourhood shops.

• Tend the garden—but speedily!

• Do the housework and do it often. Vacuuming and scrubbing floors are especially good exercise.

• Play with the kids in a nearby park or your backyard.

• Go shopping and shop hard!

• Park the car some distance from your destination and then walk to and from it.

• Take the stairs instead of escalators or lifts.

• Walk while you are talking on the phone.

Once you develop the habit of regular exercise, you will find it hard to quit. It is an excellent habit to acquire, and the fitter you are, the easier it will be to ride out the storm during those not-so-good times.

There is also no reason for children and adolescents with IBD to not participate in sports and various activities as long as they feel up to it. It will do them good physically and emotionally, and will help them keep in touch with their peers.

Soothe your mind A healthy mind is just as important as a healthy body.

If you can find an outlet for your creativity—whatever that happens to be—or any activity that allows you to forget your cares and concerns even for a short while, you will feel better overall. So go and watch a movie, go crazy with the karaoke, take out those paintbrushes and start your masterpiece, simply listen to some music, or get lost in a book—you will feel transformed.

Communicate You might feel that no one will ever understand your condition and what you are going through. You might feel ashamed about having an illness, especially one that requires you to rush off to the loo at a moment’s notice, possibly many times a day. Children and

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adolescents in particular can feel embarrassed and frustrated about being different from their peers and might want to hide the fact that they have a medical condition.

Every person with IBD has his or her own unique experience and has the right to work through the various issues at his or her own pace.

Keep in mind though that communication is a key strategy towards staying in touch with family, friends, colleagues, schoolmates, and the world in general.

• When you are ready, be open with family, friends and colleagues about your condition, even just briefly. Give them the opportunity to understand it and to support you.

• Your medical team will assume that you are doing well unless you discuss your concerns, so never hesitate to address quality-of-life issues with them.

Let them know what bothers you. Maintaining quality of life is one of the major goals of IBD treatment.

• Parents: Let your child decide if he or she wants to tell friends about their condition. But be sure to let teachers, school administrators, and the school nurse know about their IBD so that plans can be put in place for time away, access to toilet facilities as needed, and taking medications during school hours.

• Kids: Talk to your parents and your doctors. Ask as many questions as you want. Ask again if you were not sure about the answer. You have a right to hear the truth but you also need to let others know what is bothering you so that bad situations can get better.

Plan Planning can help you cope with some of the more troublesome aspects of IBD. • Make sure you know where the toilets are located in restaurants, shopping centres, theatres and on public transportation routes.

• Take along extra underwear and toilet rolls whenever you go out.

• Carry your Can’t Wait card with you at all times.

• If you need to be hospitalised, take some things with you that can help you through this time: – your own pillow – books and magazines – music and headphones for the times when you’re too tired or too sick to read – some casual clothes so that you can get out of those dreaded hospital pyjamas!

• If you’re planning to travel, see Section 15 ‘Travelling with IBD.’

Learn There is a wealth of information available to you that can help you take more control of your life and your condition.

• A sk your clinical team about your condition, your medications, and other forms of treatment.

• Search the Internet for information but learn how to recognise useful websites, avoiding ‘charlatan’ websites.

Some examples of useful websites are: – Crohn’s and Colitis Australia™ (CCA) (www.crohnsandcolitis.com.au) – Crohn’s & Colitis Foundation of America (www.ccfa.org) – New Zealand Crohn’s and Colitis Support Group (www.crohnsandcolitis.org.nz) – Crohn’s & Colitis Foundation of Canada (www.crohnsandcolitis.ca) – National Association for Colitis and Crohn’s Disease (UK) (www.crohnsandcolitis.org.uk) • Visit your local library for books and papers about IBD. • Either through support groups or other sources (e.g., your clinical team), try to find others in situations similar

to your own. Reach out to them, share your experiences, and give yourself a chance to learn from theirs.

• Sign up for membership with CCA to keep abreast of news, events, and current research relating to IBD.

Challenge Challenge yourself and those around you. Achieving even small milestones can make you feel better about yourself and your capacity to participate in all that life has to offer.

• If you feel you have been stuck in a rut for some time (e.g., after surgery), make a plan to get out of the house and then stick to it. Engage family members or friends to see you through the plan. If you truly do not feel up to it on the day, make a plan for another day. Having goals is the best way to move forward.

• In the nicest possible way, challenge your clinical team about their knowledge of new treatments and new research. You have a right to receive the best possible care.

If you have genuine concerns that your current treatment is not keeping pace with available options, raise the questions. Not all practitioners suit all patients and vice-versa. You might need to change doctors more than once to find the right match, but do avoid endless shopping around as it could compromise your care and, ultimately, your health.

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Achieve

Become a self-manager

Never let IBD hold you back from being who you want to be. Set personal goals for yourself, then go out there and get them. For example, you can attend trade school/university, travel, have intimate relationships, have a family, etc. There is nothing holding you back as long as you believe in yourself. There are bound to be extra challenges along the way but these are never insurmountable. The networks and support services already available for anyone with chronic illness keep improving all the time, and there are options available to you. If at any time you feel the need to re-evaluate your position or your feelings, you can always apply the COPE principles as discussed in the section Emotional Effects of IBD.

No matter how many persons you have around to support you and no matter how useful, understanding, and loving they are, the one who’s ultimately responsible for your own well-being is yourself. Keep in mind that you control the disease and you control your life.

Seek support Chronic diseases such as IBD can evoke a wide range of emotions and lead to other conditions such as depression and anxiety disorders. If you feel that you are becoming less able to cope with the daily challenges of living with IBD, you might benefit from additional support. No one is ever expected to go it alone. The support of family, friends, colleagues, and your clinical team can help see you through the more difficult times. But they will never know you need it unless you ask for it.

• A s best as you can, nurture your relationships with family, friends and colleagues. They care about you and will most likely rush to help you if you give them a chance. Do not take them for granted.

• Seeking support should be regarded as a strength, not a weakness. By allowing others to gain insight into your vulnerabilities, you can strengthen your relationship and give them the opportunity to feel useful. The way life goes, you never know when you might need to return the favour.

• Remember that you are not alone. Talk to others who share your condition. Support groups are often invaluable in this regard.

• A social worker, specialist nurse, or counsellor can be available as part of your clinical team. Don’t be reluctant to go to them for education and support, particularly if you feel like things are getting on top of you.

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So don’t forget to: • take an active interest in life • eat well • exercise • plan wisely • communicate.

You will also need to: • attend scheduled medical appointments • take medications exactly as prescribed, even when you’re feeling well, as they may be being used to maintain remission; if you’re having trouble remembering to take your medications, place them by your toothbrush so that you can’t miss them.

• learn to recognise the signs that something’s not quite right so that you can prevent disease symptoms or complications from escalating • report any side effects of medications • be an active partner in your own health care.

Throughout this book, we have said repeatedly that you can choose to control the disease instead of letting it control your life. We know that this is far easier said than done, but keep in mind that you have a vast range of support available to you, including your family, your clinical team, the community, information on the Internet, the government, and various health organisations, including Crohn’s & Colitis Australia.

We are here to help, and you need never be alone.

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RESOURCES AND SERVICES AVAILABLE FOR PEOPLE WITH IBD In this section, we provide a list of resources and services that are most relevant to those with IBD, including a brief overview of the information and support each of them provides, as well as contact details as appropriate.

Resources and services available for people with IBD In Australia, we’re fortunate to have a broad range of resources and services available for people with chronic conditions such as IBD. By taking advantage of the information, practical advice, and support that these resources and services provide—as and when you might need it—there should never be any need to feel ‘alone’ with your condition.

Note: Most of the resources and services listed here do NOT provide health advice over the phone. If you have concerns about a health condition that you’d like to discuss with a qualified health professional, you’re advised to: • Contact your doctor • In an emergency situation, call triple zero – 000 • Contact NURSE-ON-CALL (www.health.vic.gov.au/nurseoncall/) at 1300 60 60 24 for health advice from a registered nurse 24 hours a day, 7 days a week Services that do feature a telephone helpline are indicated accordingly.

All of the resources and services contained in this section have websites that you can visit for more information. The websites have ‘Contact Us’ sections that will give additional information on how to e-mail or post them.

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Australian government resources Better Health Channel The Better Health Channel is a Victorian government initiative that aims to improve the health and wellbeing of the Victorian community. The website contains fact sheets about a range of health conditions as well as tips for healthy living, recipes for healthy eating, directories, interactive features such as quizzes and health tools, plus much more. www.betterhealth.vic.gov.au

Centrelink Centrelink provides information about how people with mental illness and their carers can get the support they are entitled to, including sickness allowance, disability support pensions and psychological treatment. www.humanservices.gov.au

Department of Health

Queensland health

The Australian Government Department of Health has a website for families, seniors, adults, parents, teenagers, carers etc. Topics covered include education and prevention, conditions and diseases, health products, rural health, services etc.

Information about a range of services aimed at achieving good health and well-being for all Queenslanders.

www.health.gov.au

Food Standards Australia New Zealand Food Standards Australia New Zealand has publications and fact sheets for the consumer. Formerly known as ANZFA (Australia New Zealand Food Authority). www.foodstandards.gov.au

healthdirect Australia healthdirect provides easy access to quality health information and advice online and over the phone from a registered nurse on how to manage your condition at home. It is available 24 hours a day, 7 days a week.

T: 13 HEALTH (13 43 25 84) (Helpline 24 hours a day, 7 days a week) www.health.qld.gov.au

SA health The gateway to South Australia’s public healthcare system with information for the community and healthcare professionals.

T: (08) 8226 6000 www.health.sa.gov.au

(Tasmania) Department of Health & Human Services The gateway to a range of health and human services provided in Tasmania.

T: 1800 022 222 (helpline)

T: 1300 135 513 (general inquiries)

www.healthdirect.gov.au

www.dhhs.tas.gov.au

National Health and Medical Research Council

Victorian government health information

The NHMRC is Australia’s peak body for supporting health and medical research, development of health advice for the community, professionals and government. Also provides advice on ethical behaviour in health care and research.

T: 1300 650 172

Information about health and the provision of health services in Victoria.

www.health.vic.gov.au

http://www.nhmrc.gov.au

WA health

Therapeutic Goods Administration (TGA)

Information about health and health initiatives in Western Australia.

The TGA safeguards and enhances the health of the Australian community through effective and timely regulation of therapeutic goods. www.tga.gov.au

State-specific resources NSW health Information about health and healthcare services and programs for consumers and health professionals living in New South Wales. www.health.nsw.gov.au

(Northern Territory) Department of Health and Community Services Information about services available for the health and well-being of people living in the Northern Territory. www.nt.gov.au/health

www.health.wa.gov.au

Finding and accessing public toilets CCA Can’t Wait Affiliates The Can’t Wait Card is issued to members of CCA who have been formally diagnosed IBD to help them gain access to a toilet in times of urgency. By recognising the card, retailers, businesses and venue operators allow people IBD access to their toilets when needed.

T: 1800 138 029 (Helpline) www.cantwait.net.au

National Public Toilet Map The National Public Toilet Map shows the location of more than 16,000 public and private public toilet facilities across Australia. The information provided about each toilet includes its location, opening hours, availability of baby change rooms, and accessibility for people with disabilities.

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Health organisations Ankylosing Spondylitis (AS) groups of Australia This organisation provides information and support for people living with ankylosing spondylitis (an extra-intestinal manifestation of IBD) as well as their partners, families, friends, and the wider Australian community. AS has support groups in most states of Australia. www.asaustralia.org

Arthritis Australia Arthritis Australia provides support and information to those with arthritis, as well as their families and friends.

It also aims to keep health professionals informed. www.arthritisaustralia.com.au

Australian Council of Stoma Associations (ACSA) ACSA represents the interests of 22 regional Stoma Associations in Australia. Visit the ‘Member Associations’ section of their website to find the local stoma association in your area. www.australianstoma.com.au

Australian Divisions of General Practice The Australian peak body representing doctors (General Practitioners) throughout Australia. www.agpn.com.au

Australian Hypnotherapists’ Association A useful site for those wanting to find an accredited hypnotherapist.

Continence Foundation of Australia This organisation is working towards a community free of the stigma of incontinence, and provides information on funding, referrals, and products. It also offers free resources to individuals and professionals to help treat weak bladder, leakage, constipation, and bedwetting.

Continence Foundation Australia also offers the National Continence Helpline Service. This is a free telephone advisory service staffed by a team of continence nurse advisors who provide information, education and advice to callers with incontinence or who are caring for someone with incontinence.

The Helpline also provides information and advice to health professionals.

T: 1800 33 00 66 (Continence Helpline, 8am to 8pm AEST Monday to Friday) www.continence.org.au

Chronic Illness Alliance The Chronic Illness Alliance (CIA) has 55 member organisations across Australia. It aims to improve health policy and health services for anyone living with chronic illness.

T: 03 8809 0641 03 8809 0626 www.chronicillness.org.au

Genetic Support Network Victoria Genetic Support Network Victoria is an organisation committed to promoting the interests and wellbeing of anyone affected by genetic conditions.

T: (03) 8341 6315 www.gsnv.org.au

www.ahahypnotherapy.org.au

IBDclinic.org.au

Coeliac Australia

IBDclinic.org.au is an online mental health service offering information, assessment, and online treatment programs (‘eTherapy’) for anxiety and/or depression for individuals with diagnosed with IBD.

Coeliac Australia promotes the purpose and objectives of Coeliac Societies in each state. The state Coeliac Societies provide information and support to people diagnosed with coeliac disease and their families, sufferers of dermatitis herpetiformis and those medically diagnosed as requiring a gluten-free diet.

T: 1300 458 836 (Helpline) www.coeliac.org.au

www.ibdclinic.org.au

Ileostomy and Internal Pouch Support Group (IA) IA is a registered charity in the UK. Its primary aim is to help those who have an ileostomy or ileo-anal pouch following colectomy through the provision of information and support. www.the-ia.org.uk

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Irritable Bowel Information & Support Association of Australia Inc. (IBIS Australia) IBIS Australia provides information and support for those living with irritable bowel syndrome, and their families. www.ibis-australia.org

Osteoporosis Australia Osteoporosis Australia is a fully registered charity that aims to improve awareness about the condition in the Australian community and to reduce fractures. The organisation provides services and information to the community and health professionals.

T: 1800 242 141 www.osteoporosis.org.au

Rural Doctors Association of Australia (RDAA) RDAA is a national body representing the interests of rural medical practitioners throughout Australia, and works towards excellent medical care for rural and remote communities.

T: (02) 6239 7730 rdaa.com.au

YOU – Young Ostomates United This is an Australian-based, non-profit organisation that aims to encourage support and friendship between young people with a stoma, their families and friends and to provide resource material to both new and well-established ostomates.

YOU activities include regular informal social gatherings, educational meetings, peer counselling, and supporting ostomy projects, including World Ostomy Day. www.youinc.org.au

Chronic Illness Peer Support (ChIPS) ChIPS is for 12 to 25–year olds living with any type of chronic illness or medical condition. It aims to provide support for the emotional impact, feelings of isolation, anger and fear that commonly occur in young people living with a chronic illness. The program is based in Melbourne at the Centre for Adolescent Health, Royal Children’s Hospital.

ChIPS programs are also available in Bairnsdale (regional Victoria), Sydney (NSW) and Mackay (QLD).

T: 03 9345 6616 www.rch.org.au/chips

Disability Services Australia (DSA) DSA provides information about the rights of people with disabilities and is one of Australia’s largest and most respected providers of employment and community support services for people with a disability.

T: 1300 372 121 www.dsa.org.au

IBD Support Australia IBD Support Australia provides online support and resources for those with IBD. It is run by volunteers who have IBD or who have been affected by IBD in some way.

The organisation provides a range of online resources, including online forums that offer support to others. www.ibdsupport.org.au

Self Help Queensland (SHQ) SHQ is a not-for-profit organisation comprising a network of self-help and support groups. It carries out a range of activities that help establish, develop, promote and sustain Self Help and Support Groups in Queensland. Their aim is to support those who are seeking their own solutions to improve their wellbeing.

T: (07) 3344 6919

Support services

www.selfhelpqld.org.au

Carers Australia

Diet and nutrition

Carers Australia provides the latest information, research, policies and services for people caring for someone with an illness or disability, including mental illness.

Dietitians Association of Australia

T: Ring 1800 242 636 to contact the carers’ association in your state or territory.

The Dietitians Association of Australia can help you to locate a dietitian in your state or territory. Their website also offers useful tips and advice for healthy eating.

www.carersaustralia.com.au

T: 02 6163 5200 www.daa.asn.au

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Nutrition Australia Nutrition Australia is a community-based organisation that aims to provide scientifically based information to help all Australians achieve optimal health through food variety and physical activity. www.nutritionaustralia.org.au

Mental health Australian Psychological Society (APS) APS is the premier professional organisation for psychologists in Australia, representing over 21,000 members. One of its services, the APS Find a Psychologist Service, is an online, telephone, and e-mail service for the general public, GPs, and other health professionals who are seeking the advice and assistance of a qualified APS Psychologist. https://www.psychology.org.au/FaP/

beyondblue beyondblue is a national not-for-profit organisation that works to achieve an Australian community that understands depression and anxiety, empowering all Australians, at any life-stage, to seek help. www.beyondblue.org.au

Parentline Parentline provides a statewide confidential telephone counselling service to parents and carers of children aged from birth to 18 years. Professional counsellors are able to explore a variety of issues that affect parenting and relationships.

T: 13 22 89 (8am to midnight 7 days a week) www.parentline.vic.gov.au

SANE Australia SANE Australia is a national charity helping all Australians affected by mental illness lead a better life—through support, training, and education.

T: 1800 18 SANE (7263) (9 to 5 Monday to Friday) www.sane.org

You can help too!

If you happen to know of a useful resource or service that is not included in this section, let us know by calling CCA at 1800 138 029.

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SECTION 19

GLOSSARY OF TERMS FOR IBD

As is the case with any medical condition, there are many specialty terms used to describe the various aspects of inflammatory bowel disease (IBD).

Specific terms are used to describe:

The members of your clinical team will do their best to explain things to you in easy-to-understand language, but sometimes the medical term is the simplest and most efficient word to use.

• symptoms

Over time, you will become increasingly familiar with the meaning of these terms and you will probably even begin to use them yourself. In any case, it is always useful to have a handy reference to turn to if you need to remind yourself of the meaning of a word or if a new term crops up that you have not heard before.

• pathophysiology (i.e. what goes wrong, where, why and how) • names of various body organs and body systems involved • tests and investigations

The Glossary of Terms defines many of the medical terms relevant to IBD that you may encounter during the course of your disease.

• surgical procedures • medications and side effects • complications

Medical term

Definition

Abdomen

The part of the body between the chest and the pelvis that contains the visceral organs such as the stomach, intestines and liver. Also called the ‘belly’.

Abdominal cavity

A large hollow space in the body containing the greater part of the gastrointestinal tract. Its upper boundary is the diaphragm and its lower boundary is the upper plane of the pelvic cavity.

Abscess

A localised collection or sac of pus surrounded by inflamed tissue (akin to a boil) that may form in the abdomen or near the anus in people with Crohn’s disease.

Absorption

The uptake and movement of nutrients from food and liquid through the intestines into the bloodstream.

Acetate

See short-chain fatty acids.

Acute

Severe but of short duration. Usually refers to an illness.

Adhesions

Scar tissue that can lead to narrowing of the intestines, most commonly forming as a result of previous surgery.

Adrenal glands

Glands located on top of the kidneys that are chiefly responsible for regulating the stress response through the production of cortisol and adrenaline.

Aetiology

The cause or causes of a disease.

Agranulocytopenia

See bone marrow suppression.

Albumin

The most important protein in blood.

Alternative medicine

Practices used instead of conventional medicine. Some examples are homoeopathy, naturopathy and chiropractic and herbal medicine.

Aminosalicylates

A class of medications containing 5-ASA (5-aminosalicylic acid) as the active component. Used to control inflammation in people with IBD.

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Medical term

Definition

Amyloid

A waxy protein substance that is deposited in some organs and tissue under abnormal conditions.

Amyloidosis

A disorder in which the protein amyloid is deposited in the organs or tissues of the body under abnormal conditions.

Anaemia

A reduction in the number of red blood cells in the blood. Usually identified by measuring haemoglobin, the protein in red blood cells that carries oxygen.

Anaesthesia

The loss of sensation and usually of consciousness produced by administration of one or more agents (anaesthetics) that block the passage of pain impulses along nerve pathways to the brain.

Anaesthetist

A medically-qualified doctor who specialises in administering anaesthetics to induce unconsciousness in a patient before a surgical procedure.

Analgesics

A category of medication used to reduce pain.

Anaphylactic shock

An often severe and sometimes fatal systemic reaction in a susceptible individual following a second or subsequent exposure to a specific antigen (e.g. peanuts, penicillin) after previous sensitisation. It is characterised by respiratory symptoms, fainting, itching and hives.

Anaphylaxis

A hypersensitivity reaction (e.g. to a foreign substance) that occurs when a person has been initially sensitised to a causative agent because of prior contact.

Anastomosis

The joining together of two ends (e.g. of the intestine) after the diseased part has been removed.

Ankylosing spondylitis

A type of arthritis affecting the spine and adjacent joints that causes pain and stiffness in the joints of the spine and less commonly in other joints.

Joints of the spine may become fused (ankylosis).

Anti-cholinergics

A category of medications used to block the effects of the neurotransmitter acetylcholine. Used in IBD to relax the muscle of the intestine.

Antigen

A substance that is recognised as ’foreign’ by an individual’s immune system such that antibodies are produced against it. The reaction between antigen and antibody may lead to inflammation.

Anti-oxidants

Substances (e.g. beta-carotene, vitamin C) that inhibit oxidation or reactions promoted by oxygen. They may help protect the body from the harmful effects of oxygen-free radicals.

Anus

The opening at the end of the gastrointestinal tract from which faeces are expelled.

Aphthous stomatitis

A condition where small white painful ulcers form on the oral mucosa (inside the mouth). Commonly known as ‘canker sores’.

Appendix

A small appendage near the juncture of the small intestine and the large intestine

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Medical term

Definition

Appliance

A pouch or device (‘bag’) worn on the outside of the abdomen that collects intestinal contents discharged through a stoma.

Arthralgia

Painful joints.

Arthritis

Inflammation of a joint and accompanied by pain, swelling and stiffness.

Peripheral arthritis affects the joints in the arms and legs. Axial arthritis affects the lower spine and sacroiliac joints near the base of the spine.

Auscultate

To listen, usually with a stethoscope, to sounds in various parts of the body.

Auto-immune disorder

A condition characterised by an inflammatory reaction to one’s own body tissue.

Bacteria

One-cell organisms often referred to as ‘germs’ that are visible only through a microscope. There are many varieties, only some of which cause disease.

Many are harmless and indeed useful, as they normally reside in the large intestine.

Barium enema

A liquid suspension containing barium sulphate that is introduced via the anus to outline the large intestine for x-ray examination.

Barium meal examination

A type of x-ray examination whereby a liquid suspension containing barium sulphate is swallowed so that it outlines the upper parts of the gastrointestinal tract.

Benign

Not malignant (i.e. not cancerous).

Beta-carotene

An organic compound found in food that is converted into vitamin A in the body. It acts as an anti-oxidant.

Bile ducts

Tube-like structures through which bile passes from the liver or gallbladder to the duodenum.

Bile salts/acid

Components of bile that are secreted by the liver and are necessary for the emulsification of fats. They are reabsorbed in the terminal ileum and transported to the liver for reuse. If the ileum is severely affected by disease or has been removed, bile salts pass into the large bowel which can irritate the lining and cause diarrhoea.

Biliary system

The part of the gastrointestinal tract that creates, transports, stores and releases bile into the duodenum to aid in digestion. Includes the gallbladder and the bile ducts both inside and outside the liver.

Biological agents

A category of immunomodulator medications derived from living organisms and their products such as proteins, genes and antibodies that block the action of tumour necrosis factor-alpha (TNF-). Examples are infliximab (Remicade®) and adalimumab (Humira®).

Biopsy

A small piece of tissue taken from the body for microscopic examination by a pathologist.

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Medical term

Definition

Bone density scan

Also known as a bone mineral density test. Is used to assess bone health and confirm a diagnosis of osteoporosis.

Bone marrow suppression

A serious side effect of drug therapy that results in the decreased manufacture of blood cells by bone marrow. May be caused by some medications used to treat IBD e.g. azathioprine, methotrexate.

Borborygmi

Audible bowel sounds caused by the movement of air and fluid through the intestine.

Breath tests

Tests which detect or measure the constituents of breath to diagnose a condition; e.g. may be used to diagnose lactose and fructose intolerance.

Butyrate

See short-chain fatty acids.

Caecum

The first part of the large intestine at the junction with the end of the small intestine (terminal ileum).

Calcium

The most abundant mineral in the human body. It has several important functions.

Carcinoma

Any type of cancer that originates in the skin or in the tissues that line the internal organs of the body.

Catheter

A tube inserted into an opening in the body to deliver or remove fluids; e.g. an intravenous catheter to give blood and other fluids; a bladder catheter to drain urine.

CBC

Complete Blood Count. Also known as FBC (full blood count), FBE (full blood exam) or CBP (complete blood picture).

CDAI

Crohn’s Disease Activity Index. A method of scoring the severity of Crohn’s disease by giving a numerical value to the signs and symptoms.

Central line

An intravenous catheter through which drugs and/or fluids can be given.

It is inserted into one of the central (large) veins of the body usually under the collar bone or into the neck.

Chimeric

Composed of parts with different origins; e.g. human and mouse origins in the case of infliximab.

Cholangiocarcinoma

Cancer of the bile ducts.

Chronic

Long-lasting or ongoing disease.

Cirrhosis

Scarring of the liver because of injury or long-term disease.

Colectomy

Surgical removal of the colon.

Colitis

Inflammation of the colon.

Colon

The large intestine or large bowel. The colon has five segments: caecum, ascending colon, transverse colon, descending colon and sigmoid colon.

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Medical term

Definition

Colonoscopy

A procedure in which a long, narrow flexible instrument (endoscope) is inserted into the large bowel via the anus to examine the entire colon and lower part of the ileum whilst the patient is sedated.

Colorectal surgeon

A surgeon who specialises in diseases of the large intestine.

Colostomy

A surgical procedure whereby the colon is brought out through an opening (stoma) created on the abdominal surface so that intestinal waste matter can drain into a bag fitted over the stoma.

Complementary medicine

Practices used in addition to conventional medicine; e.g. using tai chi or massage in addition to prescription medicine to treat anxiety.

Complication

An event that makes a simple matter more complex. With regard to issues relating to health, a disease that arises as a consequence of another disease.

Computerised (axial) tomography

Also known as a CT scan or CAT scan. A type of computerised x-ray machine that takes images from many different angles then assembles them to provide a three-dimensional image of internal structures.

Congenital

Existing before or at the time of birth.

Constipation

Infrequent passage of hard stools (bowel motions).

Contra-indication

Any circumstance in a patient’s condition that would make medical or surgical treatment inadvisable. Opposite of indication.

Corticosteroiddependent

Situations in which disease flare-ups occur when corticosteroid dosages are reduced or corticosteroids are withdrawn.

Corticosteroid-sparing

Interventions (e.g. other medications) that may permit use of lower doses or of complete withdrawal of corticosteroids.

C-reactive protein (CRP)

A blood test that may reflect the extent of inflammation within the body.

Crohn’s colitis

Inflammation of the colon due to Crohn’s disease.

Definitive diagnosis

A final diagnosis that is achieved only when all other possible causes of the signs and symptoms of a disease have been ruled out.

Dermatitis

Inflammation of the skin.

Diarrhoea

An excessive number of loose stools.

Dietitian

A specially-trained individual qualified to assess nutritional status. A dietitian works closely with patient and doctor to ensure that an appropriate diet is being followed.

Digestion

The process by which food and liquids are broken down by the body into smaller components (nutrients) that can be absorbed into the bloodstream.

Digestive tract

Another name for the gastrointestinal tract.

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Medical term

Definition

Dilated

Enlarged, stretched or widened.

Distal

Positioned further away from the centre or point of attachment.

Distal colitis

Inflammation of the left side of the colon.

Distension

Swelling or enlargement (e.g. of the abdomen).

Diverticulosis

A common condition affecting the colon of older people. It is characterised by multiple small out-pouchings (diverticula) that may become inflamed (diverticulitis).

Duodenum

The first of the three segments of the small intestine.

Dysplasia

A pre-cancerous change in the appearance of body cells, including cells lining the colon. Dysplasia can occur in patients with long-standing and extensive ulcerative colitis. Surgery (colectomy) may be recommended for these individuals.

Electrolytes

Minerals in blood and other body fluids that carry an electrical charge.

Examples are sodium, calcium and potassium.

Elemental diet

Liquid diets that contain all the nutrients the body needs in an already-digested form so as to put no stress on the digestive system.

Endoscopist

A medically-qualified doctor specially trained in endoscopy procedures such as gastroscopy and colonoscopy.

Endoscopy

A general term for any procedure to view and examine areas within the body, most typically the gastrointestinal tract (see colonoscopy and gastroscopy).

Enema

A liquid inserted into the bowel via the anus. This may be done as part of the treatment or diagnosis of a disease.

Enteral

Of or relating to the gastrointestinal tract.

Enteric-coated

A special coating on tablets or capsules that prevents the release and absorption of the active ingredient until it reaches the intestine.

Enteritis

Inflammation of the small intestine. Jejunitis is a term used if the jejunum is inflamed and ileitis if the ileum is inflamed.

Enteroscopy

A procedure in which a long, narrow flexible instrument (endoscope) is used to examine the small intestine. The instrument is introduced through the mouth and past the stomach to examine the upper parts of the small intestine (duodenum and jejunum), and through the rectum and colon to examine the lower part of the small intestine (ileum). Biopsy tissue samples may be taken as necessary.

Environmental triggers

Substances in the environment that may activate (trigger) a change in a person’s body (e.g. cause inflammation)

Episcleritis (scleritis)

Inflammation of the sclera or ‘white’ of the eye.

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Medical term

Definition

Erythema nodosum

Red, tender swellings or ‘bumps’ on the shins and lower legs that may signal a flare-up of IBD.

Erythrocyte sedimentation rate (ESR)

A blood test used to assess the severity of inflammation.

Exacerbation

An aggravation of symptoms or an increase in disease activity.

Excoriation

Damage to the surface of the skin; e.g. in the area around the anus because of diarrhoea.

Extra-intestinal

Affecting parts of the body outside the intestines. Some examples of extra-intestinal manifestations of IBD include iritis, arthritis, skin rashes and primary sclerosing cholangitis.

Faecal fat test

Measurement of the amount of fat in stools to determine if there is poor absorption of fat by the small intestine. The test usually involves collecting bowel motions for three days.

Faecal occult blood (FOB)

The presence of blood in the stools that is not visible to the eye but can be detected by simple laboratory tests.

Faeces

Bowel motions, stools, intestinal waste.

FBC

Full blood count (see CBC).

Familial

Occurring or tending to occur among family members.

Febrile

Having a high temperature or running a fever.

Fermentation

Chemical reactions that split complex organic compounds into relatively simple substances.

Ferritin

A body protein involved in iron storage. Serum ferritin concentrations are measured to assess body iron stores. A low concentration may be associated with anaemia.

Fibre

Coarse, indigestible matter consisting primarily of polysaccharides that, when eaten, stimulates intestinal peristalsis (contractions).

Fibrosis

Scarring, most often as a result of inflammation.

Fissure

A tear or break in a body surface; e.g. an anal fissure is a painful tear in the lining of the anus.

Fistula

An abnormal channel occurring between two loops of intestine, or between the intestine and another hollow structure such as the bladder, vagina or skin.

Fistulae (plural) are more common in Crohn’s disease than in ulcerative colitis.

Flare-up

The recurrence of symptoms and active disease.

Flatulence

Distension (bloated feeling) due to gas in the gastrointestinal tract.

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Medical term

Definition

FODMAPs

Fermentable Oligo-, Di- and Mono-saccharides And Polyols. A group of carbohydrates that are poorly absorbed and fermented by intestinal bacteria, resulting in extra water moving through the bowel and excessive production of gas.

Fructans

See FODMAP.

Fulminant

Severe, rapidly progressive disease.

Gallbladder

A sac-like organ of the gastrointestinal system that stores bile.

Gallstones

Hard stones containing cholesterol that may form in the gallbladder or biliary ducts.

Gastroenteritis

Inflammation of the lining of the stomach and intestines. Commonly known as Travellers’ Diarrhoea.

Gastroenterologist

A medically-qualified doctor who specialises in the diagnosis and treatment of patients with gastrointestinal diseases.

Gastrointestinal

Relating to the gastrointestinal (digestive) tract.

Gastroscopy

A procedure in which a long, narrow flexible instrument (endoscope) is inserted via the mouth to examine the upper part of the gastrointestinal tract including the stomach.

Generic

The name of something (e.g. a drug) that is not protected by trademark registration.

Genetic

Relating to, caused by or controlled by the genes. Inherited.

Glomerulonephritis

Inflammation of the capillaries of the renal glomeruli (in the kidneys).

Granuloma

A collection of cells produced in response to infection or inflammation.

A type of granuloma may be seen in the intestinal wall of some patients with Crohn’s disease.

Granulomatous colitis

Another term for Crohn’s disease of the colon or Crohn’s colitis.

Gynaecologist

A medically-qualified doctor who specialises in the routine care and diagnosis and treatment of diseases of the reproductive system in women.

Haemoglobin

The substance within red blood cells that gives them their colour and carries oxygen from the lungs throughout the body.

Haemolysis

Disintegration of red blood cells with the freeing up of haemoglobin.

Haemorrhage

Extensive or massive bleeding.

Haemorrhoids

Swollen veins of the lower rectum and anus as a consequence of constipation or sometimes diarrhoea. They may bleed after a bowel movement. Commonly referred to as ‘piles’.

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Medical term

Definition

Hepatic steatosis

A reversible condition where fat accumulates in liver cells.

Also known as fatty liver disease.

Hepatitis

Inflammation of the liver.

Hydronephrosis

Distension of the kidney that arises because of obstruction to the outflow of urine.

IBD

Inflammatory bowel disease.

Idiopathic

A situation where the cause (aetiology) of a condition is unknown.

Ileitis

Inflammation of the ileum.

Ileal pouch anal anastomosis (IPAA)

A surgical procedure performed after the rectum and colon have been removed (proctocolectomy). A pouch (reservoir) is created from the ileum and attached directly to the anus allowing the person to pass faeces in the normal manner through the anus. Also known as restorative proctolectomy.

Ileocolitis

Inflammation of the ileum and colon.

Ileorectal anastomosis

A surgical operation whereby the ileum is joined to the rectum after removal of the colon.

Ileostomy

A surgical procedure whereby the ileum is brought out through an opening (stoma) created on the abdominal surface such that waste matter can drain into a bag fitted over the stoma.

Ileum

The last segment of the small intestine.

Ileus

A condition caused by the backup of intestinal contents when peristalsis (normal intestinal contractions) fails.

Immunisation

Treatment (as by vaccination). Involves administering an organism for the purpose of making the body immune to that particular pathogen.

Immunology

The study of the immune system and the body’s immune response to infection and disease.

Immunomodulators

A group of medications that control inflammation by suppressing the immune system. Also known as immunosuppressives.

Incision

A cut in the body tissue (particularly in surgery)

Incontinence

Inability to control the passing of stools or urine.

Indeterminate colitis

The term used when pathology results are unable to clearly define a diagnosis of ulcerative colitis or Crohn’s disease of the colon.

Indication

A symptom or particular circumstance that makes medical or surgical treatment advisable or necessary. Opposite of contra-indication.

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Medical term

Definition

Inflammation

The body’s response to injury (e.g. by infection) that is characterised by pain, heat and swelling.

Inflammatory bowel disease

IBD. A collective term for ulcerative colitis and Crohn’s disease.

Inflammatory mediators

Powerful chemicals released by the body as part of the inflammatory response.

Infusion

Introduction of a liquid solution (e.g. salt, sugar, medication) into the body via a vein. May take place over several minutes to hours.

Intractable

Disease or symptoms unrelieved by medical treatment.

Intra-intestinal

Within the intestine.

Intravenous

Within or into a vein.

Invasive procedure

Involving entry into the body; e.g. by incision or insertion of an instrument.

IPAA

See ileal pouch anal anastomosis.

Iritis

Inflammation of the iris of the eye (the coloured part around the pupil).

Irritable bowel syndrome (IBS)

A condition where symptoms such as abdominal pain and irregular bowel movements (diarrhoea or constipation or diarrhoea alternating with constipation) are present but no abnormalities can be found. Not to be confused with IBD.

-itis

Means inflammation; e.g. colitis is inflammation of the colon.

Jejunoileitis

Inflammation of the jejunum and ileum.

Jejunum

The middle segment of the small intestine situated between the duodenum and the ileum.

Keratopathy

Any non-inflammatory disease of the eye.

Kidney stones

Solid pieces of material (usually calcium-oxalate crystals) that form in the kidney from substances in the urine. Usually occur in IBD because of malabsorption of fat.

Lactase

An enzyme in the small intestine that breaks down lactose so that it can be absorbed by the body.

Lactose

A sugar found only in milk and dairy products.

Lactose tolerance test

A test that measures the ability of the intestines to break down (digest) lactose.

Laxative

A drug used to help stimulate the action of the bowel.

Lesion

A localised abnormality; e.g. an abscess, ulcer or tumour.

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Medical term

Definition

Leukocytosis

An increase in the number of white cells (leukocytes) which mediate inflammation in the blood.

Leucopenia

A decrease in the number of white cells in the blood.

Leukotrienes

Chemical mediators released during the inflammatory process that promote the migration of white blood cells to the site of inflammation.

Local

Involving or affecting only a limited part of the body.

Local anaesthetic

A substance used to produce anaesthesia in only a limited area of the body; e.g. the skin.

Lumen

The interior of a hollow organ such as the intestine.

Lymphoma

Malignant tumours that arise in the lymph nodes or in other lymphoid tissue.

Magnetic resonance imaging (MRI)

A type of non-invasive diagnostic technique that uses a strong magnet to produce computerised images of internal body tissues.

Maintenance therapy

Medication taken when a disease is inactive to help prevent recurrence and/or reduce the frequency or severity of flare-ups.

Malabsorption

Decreased ability of the small intestine to absorb nutrients.

Malaise

A general feeling of unwellness.

Malnutrition

A poor nutritional status because of inadequate or unbalanced intake of nutrients or impaired absorption of nutrients.

Metabolism

The process by which chemical changes in living cells produce energy for the body.

Metastasis

The spread of cancer from one part of the body to another.

Monoclonal antibodies

Another name for biological agents. These are antibodies produced by a specific type of immune cell that can be used to target that cell and block its action.

Monosaccharide

A ‘simple sugar’ that cannot be further broken down.

Mucosa

The innermost layer (mucous membrane); e.g. the lining of the intestine.

Mucus

A lubricant secreted by mucous membranes such as the inner lining of the intestine. It is produced in excess by some patients with ulcerative colitis.

Mucous membrane

See mucosa.

Nasogastric tube

A tube placed into the stomach via the nose and the oesophagus.

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Medical term

Definition

Nuclear scan

A type of investigation whereby radioactive material is used to ’illuminate’ particular organs. For example, radioactively-labelled red blood cells may be injected to look for sites of bleeding; radioactively-labelled white cells may be injected to look for sites of inflammation.

Nutrients

Substances the body derives from food and liquids to produce energy and function normally.

Obstruction

A blockage (e.g. of the small or large intestine) preventing the normal passage of intestinal contents. Vomiting, abdominal pain and distension may be signs of an obstruction.

Oedema

Swelling of the tissues because of excessive amounts of fluid.

Oesophagus

The segment of the gastrointestinal tract that extends from the back of the mouth to the stomach. Commonly referred to as the ‘gullet’.

Omega-3 fats

A family of unsaturated fatty acids commonly found in fish and fish oils that may have health benefits.

Osteomalacia

Softening of bone tissue in adults usually because of a vitamin D deficiency.

Known as rickets in children.

Osteonecrosis

Death of bone tissue. May result from long-term use of high dose corticosteroids.

Osteopaenia

A condition where bone mineral density is lower than normal but is not yet osteoporosis.

Osteoporosis

Decrease in bone mass with decreased bone density and enlargement of bone spaces. Can result in porous and brittle bones.

Ostomy

A surgical procedure performed to create an artificial opening for elimination of body waste matter.

Oxygen free radicals

Toxic breakdown products of oxygen that are thought to be involved in tissue damage.

Palliative

Providing relief of pain and symptoms without curing.

Pancolitis

Inflammation of the entire colon.

Pancreas

A gland attached to the duodenum that secretes enzymes involved in the breakdown of proteins, fats, and carbohydrates.

Pancreatitis

Inflammation of the pancreas.

Paraesthesias

Abnormal sensations often felt as pricking, tingling or creeping on the skin (‘pins and needles’).

Pathogen

A micro-organism (bacterium or virus) capable of causing disease.

Pathogenesis

The origin and development of a disease.

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Medical term

Definition

Percutaneous needle aspiration/biopsy

A procedure that uses specialised needles to pass through the skin and obtain a sample of fluid (aspiration) or tissue (biopsy).

Perianal

The area in and around the anus.

Perineum

A narrow bridge of skin and muscle in front of the anus that forms the pelvic floor.

Peristalsis

Wave-like muscular contraction and relaxation of the intestine by which food mass is propelled.

Peritoneum

The inside lining of the abdominal cavity.

Peritonitis

Inflammation of the peritoneum.

Polyols

See FODMAP™.

Polyp

A small growth on the inner lining of the intestines that may become malignant over time.

Polysaccharide

A complex carbohydrate (e.g. cellulose, starch or glycogen) that can be broken down into monosaccharides.

Pouchitis

Inflammation of the inner lining of a surgically-created pouch that can develop after ileal pouch anal anastomosis (IPAA) surgery. The cause is uncertain but is thought to be an overgrowth of bacteria.

Prebiotics

Non-digestible food ingredients that provide nutrients to stimulate the growth or activity of ‘good’ bacteria in the gastrointestinal tract.

Primary sclerosing cholangitis

Inflammation of the bile ducts of the liver that blocks the transport of bile to the intestines. It is thought to be an auto-immune reaction.

Probiotics

A dietary supplement containing live bacteria that can change the population of bacteria in the large intestine from ‘bad’ to ‘good’.

Proctitis

Inflammation of the rectum.

Proctocolectomy

Surgical removal of the rectum and colon.

Proctosigmoiditis

Inflammation of the rectum and sigmoid colon.

Pro-drug

A modified, inactive form of a pharmacologically-active drug that is converted by body enzymes to the active form.

Prognosis

The likely course and outcome of a disease; i.e. what is likely to happen in the future.

Prolapse

The falling down or slipping of a body part from its normal position such that it may protrude through an opening; e.g. a prolapsed ileostomy.

Prophylactic therapy

Preventative treatment.

Propionate

See short-chain fatty acids.

146 | The Inside Story: A Toolkit for Living Well with IBD

Medical term

Definition

Proximal

Positioned close to the centre or point of attachment; e.g. the ileum is proximal to the colon.

Pyoderma gangrenosum

A skin condition where purplish nodules and pustules develop and may join together (coalesce) to form ulcers. Can occur on the limbs and occasionally other body parts of people with IBD.

Quality of life

The degree of well-being felt by an individual. It has both physical and psychological components.

QuantiFERON Gold®

A blood test used to determine if a person has previously been exposed to tuberculosis.

Radiologist

A medically-qualified doctor who specialises in the interpretation of x-rays and other methods of imaging.

Raffinose

See FODMAP.

Relapse

Recurrence of disease or symptoms after a period of improvement.

Remission

Absence of disease activity or disappearance of symptoms.

Resection

Surgical removal of part of an organ or structure.

Resistant starch

Starch not able to be digested in the small intestine.

Restorative proctolectomy

Another name for ileal pouch anal anastomosis (IPAA) surgery.

Rheumatologist

A medically-qualified doctor who specialises in the diagnosis and treatment of disease involving the joints and associated structures.

Sacroiliitis

Inflammation of the sacroiliac joints (near the base of the spine) which may cause stiffness or pain in the lower back.

Scar tissue

Connective tissue that forms when a cut or open wound heals. May cause adhesions after surgical procedures.

Schilling test

A test to determine if the absorption of vitamin B12 is normal.

Sedation

The process of inducing a relaxed easy state; e.g. before endoscopy procedures.

Sepsis

A systemic or ‘whole body’ response usually caused by a local infection of bacterial origin.

Septicaemia

Invasion into the bloodstream by bacteria, viruses or fungi from a focus of infection somewhere in the body.

Shock

Profound depression of the body’s vital processes. Signs include a rapid but weak heart beat, rapid and shallow breathing, low blood volume and low blood pressure. Can occur after injury, haemorrhage or major surgery.

SECTION 19 Glossary of Terms for IBD | 147

Medical term

Definition

Short-chain fatty acids

Substances produced by the breakdown by bacteria of non-digestible food matter in the large intestine. May have beneficial effects in IBD. Examples are acetate, butyrate and propionate.

Sigmoidoscopy

A procedure in which a long, narrow flexible instrument (endoscope) is inserted via the anus and through the rectum to examine the sigmoid colon. Sedation is not usually required.

Skin tags

Swollen lumps or ‘flaps’ of thickened skin that can occur just outside the anus in people with Crohn’s disease.

Sphincter

A ring of muscle that surrounds an opening such as the anus.

Spondylitis

Inflammation of the joints in the spine. See ankylosing spondylitis.

Steatorrhoea

Excessive amounts of fat in the stool due to poor absorption.

Stenosis

Narrowing of a passage (canal) or opening.

Stoma

A surgically-created opening whereby the intestine is brought out through the abdominal surface to allow drainage of intestinal contents. See colostomy and ileostomy.

Stomal therapist

Nurses specially trained in the care of stomas.

Stools

Faeces.

Stricture

A narrowed area of intestine usually caused by active inflammation or scar tissue.

Stricturoplasty

A surgical procedure whereby a narrowed area (stricture) of intestine is opened up without removing any of the bowel.

Subcutaneous

Under the skin.

Subtotal colectomy

An operation that involves removing most of the colon and leaving the rectum intact.

Suppository

Medication shaped in the form of a cylinder or cone for insertion into the rectum.

Systemic symptoms

General effects of a disorder on the body. Examples are fever and weight loss.

Terminal ileum

The lowest end of the small intestine before it joins the large intestine.

Total parenteral nutrition (TPN)

A term which refers to all the body’s nutritional requirements being given intravenously via a catheter placed in a large vein near the collarbone.

TPN is used to ensure adequate nutrition in severely ill or malnourished patients, to rest the bowel or to prepare poorly nourished patients for surgery.

TPN may also be used after surgery to maintain nutrition.

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Medical term

Definition

Toxic megacolon

A serious complication from severe ulcerative colitis where the colon is abnormally distended (dilated) and may lead to perforation.

Urgent surgery to remove the colon is often required.

Tube feeding

Delivery of a liquid diet via a tube that is usually passed through the nose into the stomach or small intestine.

Ulcer

A break in the skin or in the lining of the gastrointestinal tract.

Ultrasound examination

A painless examination that uses sound waves to produce images of internal body structures.

Urethra

The canal through which urine passes from the bladder to the exterior of the body.

Uveitis

See iritis.

Vasculitis

Inflammation of the walls of the small blood vessels.

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ERC150627 December 2015