Connect Spring 2016

PREGNANCY, BIRTH AND IBD: A MOTHER’S STORY

A GUIDE TO CONFIDENTIAL HELPLINES

CONNECT Spring 2016 / No 83 / www.crohnsandcolitis.org.uk

‘I WAS TOLD TO RETIRE’ ALI JAWAD CROHN’S AND THE FIGHT FOR PARALYMPIC GLORY

DO SCHOOLS SUPPORT PUPILS WITH IBD?

Your membership magazine

FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER

Visit us online for all the latest resources, news and information on IBD

crohnsandcolitis.org.uk

WELCOME

OUR CONTRIBUTORS THIS ISSUE

GEMMA BRIGGS The contributing editor of Connect meets Ali Jawad, a Paralympian athlete with IBD. See page 16.

SHARRON FINCH The firefighter describes coping with a stressful job and IBD. See page 34.

CHRIS BLOTT; PAUL STUART

EMMA LISTER The student completed a solo Channel swim raising £7,500.

See page 27.

PENNIE TAYLOR The former BBC health journalist meets a mother with Crohn’s Disease.

See page 12.

‘WE ALL NEED SUPPORT IN THE COURSE OF OUR IBD’

Guest editor Gillian Thomas reflects on her Ulcerative Colitis journey, her work with Crohn’s and Colitis UK and her hopes for Connect

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very person who lives with an ongoing illness such as Inflammatory Bowel Disease (IBD) manages it in a unique way. However, many people find talking to someone who really listens is a great help. As a co-founder of Crohn’s and Colitis Support and a long-time counsellor for people affected by IBD, I know just how much difference being listened to can make.

I have lived with Ulcerative Colitis for nearly 45 years. I was at the first ever meeting of what would become Crohn’s and Colitis UK and an early committee member. This led to my completing the first research project in the UK into living with IBD, and a working life as a counsellor for people affected by the condition.

I am particularly pleased to be involved in an article about the invaluable support services provided by Crohn’s and Colitis UK. It reminds us all of the need for support at some stage in the course of our IBD. A good example of this is the feature about pregnancy and IBD. Pregnancy can be a nerve-wracking experience without the complication of an ongoing

disease, so information and support at this time can make all the difference to how people manage this life-changing event. Similarly, support from schools can help children with IBD get the best from their education.

I am delighted to see our cover star is the remarkable Ali Jawad. I love to read of people with IBD who achieve amazing things. I am also aware of those who may never manage these sorts of things, but whose achievements in daily living are none the less heroic than those whose lives have greater visibility.

I would like to see Connect connecting with as many people with IBD as possible, both those with exciting tales to tell and those whose stories of success will only be known to themselves. I hope Connect will offer everyone a message that is optimistic, but realistic.

Gillian Thomas

CROHN’S AND COLITIS UK is a national charity leading the battle against Crohn’s Disease and Ulcerative Colitis. We are fighting to achieve a better quality of life for the 300,000 people in the UK suffering physically and emotionally from these and other forms of Inflammatory Bowel Disease (IBD). Ultimately, we want to find a cure. For more than 35 years, we’ve been working with and for patients and their families, the nurses, doctors and all those who work in healthcare who treat them, and the policymakers who can bring about change. We provide high-quality information and support to enable people to manage their conditions. We believe people living with Crohn’s and Colitis should be able to live their lives to the full. We won’t stop fighting until we’ve won.

CONNECT • SPRING 2016 • 3

DO YOU WANT TO FUNDRAISE FOR US?

We are here to help with ideas, fundraising packs, T-shirts, running vests, collecting tins, cheerleader packs and a whole lot more. For information, contact us on 01727 734485 or fundraising@crohnsandcolitis.org.uk

SPRING 2016

CONTENTS CONNECT Please note we have moved.

Our new address is: Crohn’s and Colitis UK, 45 Grosvenor Road, St Albans, Hertfordshire AL1 3AW

#CROHNSANDCOLITISUK

Events, volunteering, fundraising, news ... tell us about what you’ve been up to

I WAS ONE OF THE LUCKY ONES

Email enquiries@crohnsandcolitis. org.uk Online www.crohnsandcolitis.org.uk Membership and general enquiries 01727 830038 Connect is the magazine for Crohn’s and Colitis UK. Registered charity: England 1117148 Scotland SC038632 Editor Kathleen Morgan kathleen.morgan@ thinkpublishing.co.uk Editor for Crohn’s and Colitis UK Natalie Christie Contributing editor Gemma Briggs Medical editor Dr Philip Smith Sub-editors Sam Bartlett, Sian Campbell, Kirsty Fortune Design John Pender

Published by Think on behalf of Crohn’s and Colitis UK

CHRIS BLOTT; SHUTTERSTOCK; ANGELA CATLIN

Think, Suite 2.3, Red Tree Business Suites, 33 Dalmarnock Road, Glasgow G40 4LA www.thinkpublishing.co.uk ISSN 2059-8408

12 NOTEBOOK

FEATURES

8 Purple patch Crohn’s and Colitis Awareness Week proves a hit 10 Vocal backing Fame Academy’s Carrie Grant helps launch My Crohn’s and Colitis Care at Westminster

12 Baby steps Specialist antenatal services can make all the difference for mothers to be with IBD 16 Paralympic power A diet of discipline and laughter is aiding weightlifting medal hopeful Ali Jawad in his quest for gold 20 Life lessons A schoolgirl tells how the right support can give pupils with Crohn’s and Colitis the confidence to flourish 24 Here when you need us However you get in touch, help is at hand from a range of Crohn’s and Colitis UK confidential support services

24

YOUR VOICE 27 Fundraising and vital signs A cross-Channel swim, plus news from around the UK 29 Just ask Experts answer your queries 32 Write stuff New-edition IBD publications 34 My life Female firefighter Sharron Finch

20

YOU CAN GET INVOLVED. JOIN US AT OUR AGM. Please see the back page.

Help us shape our FUTURE together

CONNECT • SPRING 2016 • 5

NOTE BOOK NEWS FROM AROUND THE UK

IBD EXPERIENCE OF SOUTH ASIAN COMMUNITIES HIGHLIGHTED CROHN’S AND COLITIS UK FUNDS UNIVERSITY RESEARCH PROJECT, WRITES PENNIE TAYLOR

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ore than three million people of South Asian origin live in Britain, yet little has been known about the impact of ethnicity on patients with Inflammatory Bowel Disease (IBD) – until now.

A report by a team at the University of York has illuminated the experiences of South Asian adults living with IBD. The LISA project, funded

by Crohn’s and Colitis UK, examined the cross-cultural impact of IBD alongside more specific difficulties that could be related to ethnicity.

Dr Suzanne Mukherjee, lead researcher of the project, said: “There is a suggestion IBD prevalence rates among people of South Asian origin are growing.

We wanted to learn about their experience. That’s important if we are to improve care.”

Researchers at the university’s Social Policy 6 • SPRING 2016 • CONNECT

Research Unit found that, in common with others affected by IBD, people of South Asian origin reported painful, exhausting flare-ups, the need for frequent trips to the toilet, depression, and feelings of anxiety and isolation.

The research revealed some aspects of South Asian cultures meant people with IBD faced additional challenges. A tradition of silence around illness and bowel problems could lead

IBD EXPERIENCE SHARED ON SOCIAL MEDIA RAKHEE PATEL TOOK PART IN LISA PROJECT A participant in the LISA project has used social media to share her experience of IBD. Rakhee Patel, 25, who has been living with Crohn’s

Dr Suzanne Mukherjee, third from left, and the LISA team

to difficulties, and lack of understanding about IBD might cause social stigma.

Dr Mukherjee said: “Our research participants told us there is not a great deal of knowledge about IBD in

Disease since she was 11 years old, is of Indian origin.

She said: “My family is supportive of me, but it came as a shock to the wider community who are not used to someone so young being so ill. I kept it quiet for years because I was embarrassed by the symptoms. Then I realised if I don’t share, no one will understand.”

In 2014 Rakhee shaved her head to raise money for

THE RESPONSE TO THE LISA PROJECT WAS VERY POSITIVE Crohn’s and Colitis UK, and increase awareness of IBD, launching a Facebook page and Twitter feed.

She was nominated in the Rakhee Patel

TELL US WHAT YOU THINK WE WOULD LIKE YOUR FEEDBACK ON CONNECT

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s we bring you the spring issue of Connect, your new look membership magazine, we’d like to hear what you think.

Following positive feedback about the launch issue, featuring the blues singer Laurence Jones, we hope you will find this edition of Connect just as informative and engaging.

The Paralympian weightlifter and world championship gold medallist Ali Jawad shares his experiences of living with IBD in this issue of Connect as he prepares for Rio 2016.

TELL US WHAT YOU THINK Email us at connect@ crohnsandcolitis.org.uk

Young People’s category at the Crohn’s and Colitis UK awards 2014.

“I no longer suffer the social stigma of saying I have IBD,” she said.

“Others tell me that what I am doing also helps and inspires them.”

FOR MORE INFORMATION www.facebook.com/ rakheeisshavingherhead and https://twitter.com/ RakheeHeadShave

and their close relatives.”

The research found words such as ‘disease’ and ‘illness’ could have different connotations in the South Asian context, implying conditions were life threatening or infectious when they were not.

The two-year project involved interviewers from various backgrounds.

Participants were contacted through IBD clinics in five areas of England. The research involved 20 women and 13 men of Indian, Pakistani, Bangladeshi or Punjabi ethnic heritage living with IBD. Dr Mukherjee said: “The response to the project was very positive,

and we even had a waiting list of people wanting to take part.”

Most participants felt spicy food exacerbated their symptoms, and that their intolerance of a South Asian diet – along with the desire to conceal their IBD – made socialising difficult.

Dr Mukherjee said: “It is important that awareness of IBD is improved to support people living with the condition in South Asian communities. We hope the LISA research can start to influence change.”

‘THEY TREATED ME LIK A WHOLEE PERSON ‘

South Asian communities.

For instance, there is no word for Crohn’s in some South Asian languages, which complicates things when it comes to explaining the condition to patients

HOW AN INN HELPED EN OVATIVE ANTENATA L CLI SU FOR A MUM-RE A SMOOTH PREGN NIC ANCY TO-BE WITH CROHN’S

FOR MORE INFORMATION Find the LISA project report at http://bitly.com/LISA_project

WORDS PENNIE PHOTOGRAPHS TAYLOR CHRIS BLOTT

12-15 CCUK_J

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indd 12-13

CONNECT • SPRING 2016 • 7

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pr dr ba thi “I w just L preg the f the fa “I sta want says 3 was ba clinic a Bloo active d initiated mid-Jan pregnan the gastr James’s U It was that Leann James’s gro Bowel Dise “That w she says. “I relation to m my pregna n areas, in the time. They tr person, and h Investigati that Leann e’s

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NOTE BOOK

AWARENESS WEEK BRINGS SURGE OF SUPPORT

SEVEN-DAY CAMPAIGN BOOSTS PROFILE OF CROHN’S AND COLITIS AND RAISES FUNDS

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nflammatory Bowel Disease (IBD) hit the headlines last December as people with IBD, families and friends took part in Crohn’s and Colitis Awareness Week.

During the campaign, supporters donated £7,000

TWITTER TAKEOVER Crohn’s and Colitis UK helped spread the word about the effects of IBD with a Twitter ‘thunderclap’ reaching 740,000 people. It also made the most of the social media site with the #7daysofIBD campaign, with celebrity supporters including Rylan Clark.

Total impressions on Twitter during the week were a massive 249,200.

through activities such as Purple Friday, while in the political sphere motions to support Awareness Week were tabled in the Welsh Assembly and Scottish Parliament, with more than 40 MSPs attending our exhibition in Holyrood during the week.

Juliet Chambers, communications manager at Crohn’s and Colitis UK, said: “It was great to see so many of our members taking part in Purple Friday, which raised fantastic awareness of IBD along with valuable funds.

“Our #7daysofIBD campaign captured our

IT WAS GREAT TO SEE SO MANY PEOPLE TAKING PART

VENUES TURN PURPLE Staff at the Crohn’s and Colitis UK head office in St Albans joined other workplaces, schools, colleges and gyms in turning purple to raise awareness of IBD.

members’ attention and showed the reality of living with Crohn’s and Colitis and the huge impact these conditions have on a person’s life.”

The campaign’s success can be measured by the surge in support, with the charity’s Facebook activity reaching more than three million people, including over 1,629 new page likes.

In traditional media, more than 25 outlets covered the campaign,

PUTTING IBD IN THE PICTURE

FOR MORE INFORMATION www.crohnsandcolitis.org.uk/ awarenessweek

Crohn’s Disease and Ulcerative Colitis 300,000 people in the UK have Crohn's Disease or Ulcerative Colitis the two main forms of Inflammatory Bowel Disease.

DIAGRAM HELPS SPELL OUT CONDITIONS A simple diagram has been designed to help demystify Crohn’s Disease and Ulcerative Colitis (UC).

The striking infographic, launched during Crohn’s and Colitis Awareness Week last December, is to help those diagnosed with the two main forms of Inflammatory Bowel

including The Huffington Post and Metro, while the Crohn’s and Colitis UK website received more than 40,000 visits throughout the week.

Members’ blogs, describing the daily impact of living with IBD, featured on the website with the most popular, by Thaila Skye, attracting 1,900 views.

Every someone in the UK is diagnosed with

Crohn’s or Colitis.

Disease understand their conditions.

Around 300,000 people in the UK have Crohn’s Disease or UC, while one in four newly diagnosed are under 16.

Treatments can include:

abdominal pain

depression osteoporosis

weight loss

Possible

causes: Your genes.

mouth ulcers

Parts of the digestive

system become swollen, inflamed and ulcerated.

Crohn’s Disease • Can affect any part of the digestive system • All layers of the bowel may be inflamed

Ulcerative Colitis • Affects the rectum and colon • Only the inner lining of the colon is inflamed

joint pain fatigue

fistulas

An abnormal reaction of the immune system to bacteria in the gut.

something in the

diet

medication

Crohn’s and Colitis

can cause:

Triggered by

8 • SPRING 2016 • CONNECT

16. surgery

diarrhoea anaemia

FOR MORE INFORMATION www.crohnsandcolitis.org.uk/aboutinflammatory-bowel-disease

1 in 4

people newly

diagnosed

are under

Environment.

There is no

known cure. www.crohnsandcolitis.org.uk Registered charity in England and Wales (1117148) and Scotland (SCO38632).

TOGETHER DAYS A SUCCESS VOLUNTEERS GATHER TO SHARE EXPERIENCES Volunteers for Crohn’s and Colitis UK united at five special events across the UK designed to help them network and learn of upcoming activities.

More than 200 existing and new volunteers attended Together Days at venues in Edinburgh, Leeds, Birmingham, Bristol and London.

Peter Kelham, volunteer development manager, Crohn’s and Colitis UK, said: “Together Days were designed to update volunteers on changes in our

volunteering programme, encourage enthusiasm for activities and inform them of the new brand and website, as well as other developments.”

The events are part of ongoing developments to make volunteering opportunities, throughout the charity, feel more ‘joined up’ and flexible across local and regional networks.

A quarter of attendees at the Together Days were new to the charity while 75% were already volunteering for it.

FUNDRAISING AWARD IN HONOUR OF ALEX DEMAIN

SHUTTERSTOCK

YOUNG STAFF MEMBER REMEMBERED WITH PRIZE

Crohn’s and Colitis UK is to launch a fundraising award in memory of a staff member of the charity.

Alex Demain, who died aged 29 last year, joined Crohn’s and Colitis UK in 2010, and quickly built relationships with charity supporters.

Outgoing and modest, he managed events with a sportsman’s flair for being part of the action.

Alex, pictured, was admired by his colleagues for coping privately and courageously with Crohn’s and cancer. Crohn’s and Colitis UK is proud to launch a fundraising award in his memory.

Do you know a dedicated and imaginative young fundraiser?

The Alex Demain Young Fundraiser of the Year award, open to anyone in the UK, will involve two categories: under 16-year-olds, and 16 to 29-year-olds.

If you have been motivated by the innovative ways a young person has fundraised for Crohn’s and Colitis UK, we would love to receive your nomination. Under 16-year-olds must have raised at least £250, and 16 to 29-year-olds £1,000 or more.

Passionate about his work, Alex loved to hear the wonderful ways our incredible supporters pushed the boundaries to boost funds for – and awareness of – the charity. We are honoured his family will be involved in judging the award. The nomination process is on our website. Winners will be announced at our 2016 AGM. FOR MORE INFORMATION www.crohnsandcolitis.org.uk/alex-demain

CROHN’S AND COLITIS UK CALLS FOR TRUSTEES CAN YOU HELP US TO REACH OUR VISION?

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chieving a better quality of life for people with IBD is going to take the collective efforts of some extraordinary people.

Crohn’s and Colitis UK is calling for equally dedicated people – including a new treasurer – to join its board. The successful candidates will succeed four valued trustees who reach their end of term of office in June.

Applicants with knowledge of health services, the political environment and business are particularly encouraged, although all applications are welcomed. The profiles of the current board can be viewed on the charity’s website.

Keith Stewart, national chairman of Crohn’s and Colitis UK, said: “Being a trustee is a rewarding and wonderful way to be involved with a cause that matters to you. The more effective the board of trustees, the greater difference we can make.”

The closing date for applications is 9am on Monday 22 February.

Interviews will be on 14 and 15 March. The successful candidates will be invited to observe the April board meeting, with a view to being nominated for election at the AGM in London on 4 June.

FOR MORE INFORMATION Visit www.crohnsandcolitis.org.uk or email Gill.Lamb@crohnsandcolitis.org.uk for information packs on trustee roles, and details of the company managing all applications for the role of treasurer CONNECT • SPRING 2016 • 9

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MEMBERSHIP FEE RISES £4 ‘EXCITING BENEFITS’ TO BE ANNOUNCED

The annual membership fee for Crohn’s and Colitis UK will rise from £15 to £19 from April due to unavoidable cost increases.

The fee will remain at £15 per annum for anyone able to pay by direct debit and the charity will continue to offer free membership to people on a reduced income or in full-time education.

Dan McLean, director of marketing and membership at Crohn’s and Colitis UK, said: “We are hugely grateful for all the support members bring to the charity and we had tried to avoid a price increase.

However, payments by direct debit are more cost-effective for the charity and can also be organised over the phone, which is a saving we can pass on to members.

“We are reviewing our membership package and will be in touch about new and exciting member benefits coming your way.

“Please contact us if you would like to discuss any aspect of this notice.”

FOR MORE INFORMATION Please call 01727 734465 or email membership@ crohnsandcolitis.org.uk 10 • SPRING 2016 • CONNECT

Left to right: David Barker, CEO of Crohn’s and Colitis UK; Sam Cleasby; Ed Vaizey MP and Carrie Grant

TV VOICE COACH AND CHARITY AMBASSADOR UNVEILS GUIDE

MPS JOIN CARRIE GRANT FOR LAUNCH OF IBD PATIENT CHARTER

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ore than 80 MPs joined television presenter Carrie Grant at the launch of a guide to healthcare services for patients with Inflammatory Bowel Disease (IBD).

Parliamentarians from across the political spectrum joined staff from Crohn’s and Colitis UK and volunteers, many of them living with IBD – including blogger Sam Cleasby – for the launch of My Crohn’s

TOGETHER, WE CAN ALL WORK TO MAKE A DIFFERENCE

and Colitis Care at the Houses of Parliament.

Andy McGuinness, policy and public affairs officer for Crohn’s and Colitis UK, said: “It was clear there was a real desire from MPs to work with us to improve care and support services for those living with IBD.” Carrie, a regular on BBC programmes The One Show and Glee Club, has been a member and supporter of the charity since being diagnosed with Crohn’s Disease as a teenager.

She said: “I was pleased to be able to meet so many MPs and ministers to discuss issues surrounding IBD. “I often have moments of struggle when my

IBD gets me down, so I know only too well how important it is to have a great IBD team around me.”

She added: “I was thrilled to be able to talk to key decision makers about how we can all work together to make a real difference to others living with IBD.” One in four IBD services fail to see all urgent referrals within four weeks.

My Crohn’s and Colitis Care is designed to empower people with IBD to get the best from their local health service by working in partnership with their healthcare team.

MY CROHN’S AND COLITIS CARE is available to download from www. crohnsandcolitis.org.uk/mycare

INNOVATIVE PROJECTS RECEIVE FUNDS TO IMPROVE LIVES OF PEOPLE WITH IBD FOUR STUDIES AWARDED CHARITY GRANTS TOTALLING ALMOST £400,000

empower patients to deal with the difficult task of living with IBD and the fatigue this can bring,” said Lisa Warren, an IBD specialist nurse at the trust.

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rohn’s and Colitis UK has granted £364,724 in its Living with IBD Research Awards for 2015. Four projects will receive funding to investigate ways to improve the lives of those living with Inflammatory Bowel Disease (IBD).

For more than 30 years, Crohn’s and Colitis UK has been at the forefront of groundbreaking research on Crohn’s Disease and Ulcerative Colitis (UC), the two main forms of IBD. In 2015, the charity was able to grant more money to research than in continue to support previous years. high-quality research in the “Improving the lives of future in fighting the battle everyone affected by against IBD.” Crohn’s and Colitis is a The following research main focus for the charity,” projects had funding said Helen Terry, director committed by Crohn’s and of policy, research and Colitis UK in 2015: public affairs. l The University of “We are thrilled to be Hertfordshire will investing in these projects receive £115,000 for a that aim to identify useful study into the benefits ways of helping more people with IBD to manage and safety of high and moderate-intensity their conditions.

“These investments are critical if we want to improve lives now and see a world in which people’s lives are not limited by Crohn’s and University of Colitis. IBD patients Hertfordshire: can be assured that exercise and the charity will IBD study

Leeds researchers will look into fatigue and living with IBD

THEY AIM TO IDENTIFY USEFUL WAYS OF HELPING MORE PEOPLE MANAGE THEIR CONDITIONS exercise training in a subset of IBD patients.

“A clearer understanding of the effects of different types of exercise training in adults with Crohn’s is needed so that safe and effective programmes can be designed,” said Dr Lindsay Bottoms, senior lecturer in exercise physiology. l Leeds Teaching Hospitals NHS Trust will receive £8,490 to look at how changing behaviour can affect fatigue in patients with IBD. The aim is to find ways of reducing fatigue.

“Our ultimate aim is to find a simple intervention to

l King’s College London will receive £115,000 to measure the “burden of food on quality of life in patients with IBD”.

This research will look at how many people with IBD are affected by activities related to food, in order to develop tools to help them.

It builds on a study – funded by Crohn’s and Colitis UK – which developed a validated rating scale of the impact of food-related activities on quality of life.

“We do not know how many people with IBD are affected by problems with food-related quality of life, what the most common problems are, and why and when they occur,” said King’s dietetics specialist Professor Kevin Whelan. l Crohn’s and Colitis UK presented a Health Services Award in 2015, granting £126,234 to the University of Liverpool to maximise the value of data.

“This project will develop and test new ways to capture, link and analyse information about routine IBD care,” said Dr Keith Bodger, the university’s senior lecturer in cellular and molecular physiology.

CONNECT • SPRING 2016 • 11

‘THEY TREATED ME LIKE A WHOLE PERSON

‘

HOW AN INNOVATIVE ANTENATAL CLINIC HELPED ENSURE A SMOOTH PREGNANCY FOR A MUM-TO-BE WITH CROHN’S WORDS PENNIE TAYLOR PHOTOGRAPHS CHRIS BLOTT

PREGNANCY

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aving lived with Crohn’s Disease for more than half her life, Leanne Bayston knows her body well. In August 2014, as Leanne prepared for pregnancy, she was taken off the only drug that has kept her symptoms at bay – despite warning medics that things would start to go wrong.

“I wasn’t listened to,” she says. “I was just sent home to get on with it.”

Leanne soon conceived, and her pregnancy progressed well through the first trimester. Then in December the familiar signs of Crohn’s returned.

“I started having no energy, didn’t want to eat, couldn’t get out of bed,” says 36-year-old Leanne. “I knew it was back, and got in touch with the clinic again.”

Blood tests showed no markers of active disease, so no treatment was initiated. Leanne struggled on until mid-January when, 18 weeks pregnant, she had to be admitted to the gastroenterology ward at St James’s University Hospital in Leeds.

It was while she was an inpatient that Leanne was introduced to St James’s groundbreaking Inflammatory Bowel Disease (IBD) pregnancy clinic.

“That was completely different,” she says. “I could discuss how I felt in relation to my Crohn’s Disease and my pregnancy with specialists in both areas, in the same place at the same time. They treated me like a whole person, and heard what I said.”

Investigations soon established that Leanne’s disease was indeed

I WAS JUST SENT HOME TO GET ON WITH IT

CONNECT • SPRING 2016 • 13

PREGNANCY

active, and infliximab infusions were clinical management aims to keep restarted. The rest of her pregnancy both mother and unborn baby well. went smoothly, and baby Lucy was “In the past it was not uncommon born, hale and hearty, last June. for women with IBD to be told to “I got all the help and support I come off all medication when they needed at the IBD pregnancy clinic,” conceive, but awareness is growing,” says Leanne. “I felt safe knowing says Dr Selinger. “There are more they were looking out for me and and more specialist IBD nurses, and my baby. I was one of the lucky ones, they are good at getting the right I suppose.” messages across.”

St James’s combined IBD Dr Selinger wants to see antenatal centre is one of better understanding of only a few in the UK, the realities of IBD and where specialist clinics conception, pregnancy involve a consultant and childbirth among gastroenterologist, both health consultant professionals and obstetrician, IBD people with the nurse and midwife, condition. “There are who practise as a team. far too many myths Leanne Bayston: “I was “We consult together around,” he says. one of the lucky ones” which minimises One of Dr Selinger’s appointments, share consistent patients was told by her GP that messages and learn from one ‘women with Crohn’s Disease can’t another,” says the centre’s founder, get pregnant’ and was advised consultant gastroenterologist Dr to stop taking the contraceptive pill Christian Selinger. “It’s a new way of – as a result her unplanned baby is doing things, and it works.” due soon. Others overestimate the Since it started in summer 2014, risks of pregnancy to themselves and the clinic has overseen the care of their babies. more than 50 mothers-to-be with IBD. “I have significant concern that “One of women’s natural instincts women with IBD are poorly informed is to come off all medication when and making important decisions about they are considering pregnancy, but their lives on the basis of a very skewed the risks may be greater if treatment picture,” he says. “They need much is stopped,” says Dr Selinger. better access to accurate information.”

“There is a lot of confusion as the Research in Ireland has shown that drugs are not licensed for use in patients’ lack of knowledge about IBD pregnancy. It’s a complex field so GPs and pregnancy results in unwarranted don’t know enough about them, and fears and anxiety. It also highlighted the British National Formulary is no that women with IBD are more likely help. However the international to remain childless, or have fewer evidence shows that, other than children than the general population. methotrexate, the majority of IBD A desire to understand that has led to drugs can be used safely in pregnancy.” a three-year research project, funded Even so, biological drugs should be by Crohn’s and Colitis UK, now taking used with caution in the third place at the University of Leeds. The trimester because they can affect the ‘IBD and mums-to-be’ study intends baby. Infants should not have to inform women, their partners and vaccinations until they are at least healthcare providers about the six to nine months old because they experience of planning and starting a are born immunosuppressed if the family in the context of maternal IBD. mother is on biological drugs.

Professor Anna Madill, Dr Peter Untreated IBD flare-ups can pose Branney and PhD researcher Jihane problems in pregnancy because Ghorayeb are conducting in-depth inflammation may lead to miscarriage interviews with mothers from across or foetal undernourishment. Careful the UK who have IBD. 14 • SPRING 2016 • CONNECT

I FELT SAFE KNOWING THAT THEY WERE LOOKING OUT FOR BOTH ME AND MY BABY “Investigating the experience of women who have become mothers with IBD at the individual level is an unexplored field,” says Ghorayeb.

“Every woman is different and every pregnancy unique, but results gathered from our interviews will help to shed some light and reduce the information gap.”

The IBD and mums-to-be study research has identified an unjustified

FERTILITY AND IBD l Most women with inactive IBD should have no more difficulty in becoming pregnant than women without IBD. Women with active IBD, especially those with Crohn’s Disease, may have problems becoming pregnant, particularly if they are underweight and eating poorly. l Severe inflammation in the small intestine, as caused by Crohn’s Disease, can disturb the functioning of the ovaries. IBD inflammation can also cause adhesions (bands of scar tissue) that affect the fallopian tubes. l In general, male fertility is not affected by IBD. Sperm quality may be reduced by Crohn’s Disease, but this could be due to poor nourishment.

Treatment of the disease should restore fertility to its usual level.

Leanne was able to continue treatment for Crohn’s during her pregnancy and Lucy is a healthy baby

assumption among women attempting to conceive that IBD would adversely affect their fertility.

It has found mothers are overly concerned about the chances of passing IBD on genetically, and there are fears pregnancy would exacerbate IBD symptoms when, according to recent studies, one third of women experience improvement in their symptoms and one third remain the same during gestation.

Among other issues, women taking part in the study have been discussing their thoughts about IBD drug treatment in pregnancy, their method of birthing, and whether or not they breastfed their babies.

For Leanne Bayston, fear of flare-ups certainly influenced her choices during and after delivery.

When she gave birth – both to her first child, eight-year-old Jack, and to

newborn daughter Lucy – she declined the offer of Caesarean section because living in remote west Yorkshire meant that she had to be able to drive; and she took the decision to bottle feed both babies in case she might need to be admitted to hospital again at short notice.

“You just do what needs to be done, don’t you?” says Leanne, who is now planning baby number three. “Crohn’s is not going to put me off at all.”

FOR MORE INFORMATION l Crohn’s and Colitis UK has produced information sheets answering commonly asked questions about fertility and pregnancy in relation to IBD. Find them at www.crohnsandcolitis.org.uk l The research project ‘IBD and mums-to-be’ is still looking for participants, particularly women from minority ethnic communities. If you have IBD and a child between two and seven years old, and wish to share your experience, please contact J.Ghorayeb12@leeds.ac.uk

l Ileal pouch–anal anastomosis surgery (IPAA or pouch surgery) can reduce fertility in women. Very rarely, men who have had an IPAA (pouch) operation, or have had their colon and rectum removed by surgery, may have sexual dysfunction – problems with erections or ejaculation. This type of problem is often temporary or can be treated with medication. l Of drug treatments for IBD, sulphasalazine is known to reduce fertility in men. Neither partner should take methotrexate because it can cause birth defects and miscarriages, and affect sperm production. Women are also advised not to take mycophenolate mofetil. The small number of patients on thalidomide in some very specialised centres should inform doctors if wanting to conceive as this causes foetal abnormalities. In general ‘a well mother, means a well baby’ in the management of pregnant women with IBD.

CONNECT • SPRING 2016 • 15

‘I WAS SO ILL I LOST 25kg’ Powerlifter Ali Jawad tells Gemma Briggs of his bid to become the first athlete with Crohn’s Disease to win an Olympic medal

A

PHOTOGRAPHS CHRIS BLOTT

li Jawad isn’t like other sportsmen. Take a look at his Twitter feed and you’ll see multiple photos of gooey puddings and gateaux with longing captions.

“OMG there are desserts everywhere.”

“First thing I see in Hungary? CAKE!” “That moment when you have to watch your mate have dessert.”

The Paralympic powerlifter doesn’t just eschew treats in order to lead the world at his sport; he says that a disciplined diet also helps keep his Crohn’s Disease under control.

Ali, who was born without legs, is speaking a few days before travelling to Hungary for the IPC Powerlifting European Open Championships, his final competition of 2015. He will keep his social media followers updated with goofy snapshots taken with his rivals, the medal he will go on to win and, inevitably, some great desserts he hasn’t enjoyed.

“In the athlete’s village it’s friendly and you talk and have a laugh,” he says of life as a sportsman on the road, “but it’s different when it comes to the two hours of competition. When you get to the top, to the Paralympic games, it gets quite heated.”

The 26-year-old’s route to becoming one of the world’s top weightlifters began in his teens.

Originally from Lebanon, he was brought up in London. “I went to a mainstream school so I grew up with able-bodied people,” he says. “I did not see a disabled person for about 15 years; it was a bit weird.

“I was taking GCSEs and there was a gym across the road from school. I’d never been and after an exam my mate forced me across the road. I benched 100kg on my first go, which is amazing for someone of that age.”

A natural talent identified, within two years Ali began winning gold at European and world level,

WHEN YOU GET TO THE TOP, TO THE PARALYMPIC GAMES, IT GETS QUITE HEATED 16 • SPRING 2016 • CONNECT

PHOTO CREDIT

ATHLETICS

Ali Jawad has a strict diet to help manage his Crohn’s

CONNECT • SPRING 2016 • 17

As a teenager, Jawad could lift a staggering 100kg

easily qualifying for the 2008 Beijing Olympics. This event would change his life – but not in the way he had hoped.

“It was the night before the Paralympic Games in Beijing – the night before I competed – that I fell ill,” he says. “It pretty much cost me in Beijing. I still competed, but it was nowhere near my best performance.”

As many people who have an Inflammatory Bowel Disease (IBD) will have experienced, the diagnosis did not come quickly, taking nine months. For Ali, whose sport is classified by weight, this was catastrophic.

“I lost 25kg of bodyweight,” he recalls. “Before the Beijing games I was 18, living the dream, a full-time athlete. Then within 24 hours it changed completely.

“When I got diagnosed I had consultants telling me to retire because there would be no chance to compete at the top level. I could flare at any moment. That’s depressing – someone telling you your dream is pretty much over. I suffered for about four years but I had the support of Team GB and a top sports psychologist. You need a support network.”

Although changing their diet doesn’t help all those with IBD, Ali says he feels lucky to have received funding to have a nutritionist. “It’s a very normal, healthy balanced diet 18 • SPRING WINTER 2016 • CONNECT

BECAUSE I WAS BORN WITHOUT ANY LEGS I’VE NEVER REALLY MISSED THEM and it’s helped a lot,” he says, which explains the wistful tweets about cake. “A lot of consultants do not believe in diets; they have doubts because there is no proof. And I think with many Crohn’s sufferers foods do not cause a flare-up, it’s stress.”

With fortnightly injections of humira and his strict diet and sportsman’s regime, Ali has not suffered a flare-up since 2012, but he knows it’s a lifestyle few can maintain. “[For me] it’s about not giving in to temptation,” he says. “I do not drink at all and having late nights is difficult as with Crohn’s sleep is very important. I focus on recovery and switching off from training. I’ve learnt how to chill out more.

“I’m lucky, but only because I live my life so strictly. At the end of the day, this is my livelihood and the Crohn’s has such a big impact if I do not control it. Even when I retire I will stick to the same discipline.”

With 20 hours a week spent in the gym, competing as an international

athlete is Ali’s full-time job. Unlike other competitors, travel has the potential to affect his health, and he must ensure his blood tests are up to date before heading abroad.

He is also cautious about food, especially during flights. “I don’t have aeroplane food,” he adds. “Anything I put in my mouth, I [want to] know what’s in there.”

He says the latter with such firmness that it’s impossible to miss the incredible determination that Ali possesses. Again, he mentions the doctors who told him to retire. “There has not been an Olympic champion who’s had Crohn’s and won,” he says.

“The ultimate goal is to get to the Paralympics in Rio. I’m in for a big shot at some sort of medal. I would be the first Crohn’s sufferer to win that medal. That’s what I’m pushing for.”

There is much that is inspiring about a conversation with this exceptional young athlete, who hopes that sharing his story will make a difference to others. There’s no doubt that moments such as posting shots online of his humira injections help normalise treatment and raise awareness. “Hopefully I can lead the way,” he says, “but my way is my way.”

Ali’s achievements are glittering, but the final insight he gives into life as a disabled sportsman shows that his struggle with IBD is as great as anyone else’s.

“I think because I was born without any legs I’ve never really missed them,” he says. “For me, having legs is abnormal. I was one of the popular kids at school; I was never bullied. I was never treated anything less than normal.

“For me, when I got diagnosed with Crohn’s is when I felt disabled; I was so ill. The Crohn’s was the big one, it finally made me feel disabled.”

Later this year we will find out if Ali becomes the first person with Crohn’s to win an Olympic medal.

Having just missed out on glory at London 2012, it is unlikely he will let it slip through his grasp this time: just a few days after this interview, he was crowned European champion.

Winning gold was surely worth missing out on dessert for.

ATHLETICS Jawad spends 20 hours a week in the gym

ALI JAWAD ON COPING WITH FLARE-UPS

1 FUEL UP “I used to take medication that suppressed my appetite. But no matter how you feel, food is not just for pleasure, it’s for fuel, so try to eat. It’s really hard when you don’t want to, but food equals recovery, so how are you going to get better without it?”

2 GET OUT THERE “Try not to isolate yourself; just try to do the normal things. Get out once a week if you are medically able to, and do what normal people do as far as possible.

Staying at home may make you feel worse”

3

WHEN I GOT DIAGNOSED WITH CROHN’S IS WHEN I FELT DISABLED; I WAS SO ILL. THE CROHN’S WAS THE BIG ONE

HAVE FUN “Do as many fun things as possible; I’m a big believer in laughter. If you are struggling, go to your local group to meet others who are going through a similar experience”

I WAS DREADING GOING TO SCHOOL WITH MY NASOGASTRIC TUBE, BUT MY FRIENDS WERE BRILLIANT 20 • SPRING 2016 • CONNECT

YOUNG PEOPLE Olivia Irvine: “Crohn’s isn’t going to get in the way”

LEARNING CURVE

Coping with school is tough for young people with a chronic condition. Olivia Irvine shows how the right support can make all the difference WORDS PENNIE TAYLOR PHOTOGRAPHS ANGELA CATLIN

T

eenager Olivia Irvine is like so many other 16-year-olds. Smart and sassy, she wants to hang out with friends and have fun. The difference between Olivia and her pals is that she has Inflammatory Bowel Disease (IBD), and right now that means wearing a nasogastric tube.

“I hate it,” says Olivia, referring to the silicone tube that delivers nutrients direct to her gut several times a day.

“I was dreading going to school with it in, but my friends were brilliant. They said ‘you made that out to be so much worse – it’s not noticeable’. That helped me feel much better.”

Facing the world can be tough for young people with IBD. Olivia is learning to deal with reactions to the most visible sign of her illness. “Often it’s a head tilt and an ‘aaaah’,” she says. “People usually assume I have cancer. Most have no idea what Crohn’s Disease is.”

Olivia was diagnosed with Crohn’s at 12. The first time she had to take modulen via nasogastric tube she was in second year at St Ninian’s High School in Giffnock, near Glasgow.

It was not a pleasant experience: the school did not offer support to prepare Olivia’s three-hourly feeds; her older brother Matthew, also a pupil, had to leave his lessons to help her take the 20-minute nasal drip in a sickroom; teachers reacted with shock seeing her for the first time. “I was really miserable,” says Olivia. “Most of the friends that I had at the time were different to now, and I felt very alone.”

This time, Olivia and her mum Julie have been struck by the difference in the school’s attitude. When they went to see the fifth-year head in advance of nasogastric treatment, he said he would make sure Olivia had all the help she needed. A member of staff who has a daughter with Crohn’s helps Olivia store and prepare the modulen she takes in the staffroom at 10am, CONNECT • SPRING 2016 • 21

1pm and 4pm each day, and all her teachers have been informed. “My year head assured me that the Crohn’s wouldn’t affect my education,” says Olivia. “Everyone treats me as normal, and that is exactly how I want it to be.”

Normalising the experience of going to school for children and young people living with chronic diseases, including IBD, is the purpose of the Children and Families Act 2014, which places a duty on schools in England to support pupils with medical conditions, and comes in addition to the equality laws and governmental guidance that apply across England, Scotland, Wales and Northern Ireland (see below).

Crohn’s and Colitis UK is a member of the Health Conditions in Schools Alliance, which campaigned for the Children and Families Act 2014 to include a duty on schools to support children with health conditions. The Alliance’s website carries detailed information on the policies that should be in place in schools as well as examples of individual healthcare plans that can be used.

“We are monitoring schools in England to see how many are successfully developing policies to comply with the act,” says Jackie Glatter, health and public service development manager at Crohn’s and Colitis UK. “Young people with IBD and their parents can also help raise awareness by asking their schools whether they have the right things in place, and letting us know their experience.”

IBD nurse Vikki with a young patient and her brother

In Scotland no specific law governs how schools deal with chronic condition management. According to Craig Goldie, principal teacher pupil support at Lanark Grammar School, each establishment can develop its own approach. At his school, young people with IBD are supported according to their needs with flexible timetables, quiet space and pupil assistants.

Support teachers keep in close touch

with pupils and their parents. “When it comes to information sharing, say, we may only tell subject teachers and essential staff, says Craig. “We listen to what the young person wants, and take it from there.”

Vikki Garrick, who has worked as a paediatric IBD nurse specialist for 10 years, has seen major improvements in the way schools respond to the needs of children with Crohn’s and

LAWS AND GUIDANCE FOR CHILDREN WITH MEDICAL CONDITIONS

Schools must support children with a disability

22 • SPRING 2016 • CONNECT

l The Equality Act 2010, which applies to England, Scotland and Wales, specifies that governing bodies or proprietors must make reasonable adjustments to ensure that children and young people with

disability are not put at a substantial disadvantage compared with their peers. l The equivalent legislation in Northern Ireland is the Disability Discrimination Act.

l Further information about legislation and guidance across the UK nations is available at www.medical conditionsatschool. org.uk l The Children and Families Act 2014, which applies to England, states that pupils at school with

YOUNG PEOPLE Colitis. “They’re not conditions people specialist nursing team treat around really want to talk about … bowels and 300 young people, ranging in age poo, are they?” she says. “But by from 18 months to late teens. “Young understanding what these kids’ needs people’s needs are special,” says Vikki. are, teachers can do so much to help “We build a relationship based on them through what is a very vulnerable trust, and they know they can tell stage in their lives.” us anything.”

Vikki was voted the Honesty is vital when it Crohn’s and Colitis UK comes to managing IBD IBD nurse of the year in in young people. When 2012 after being Olivia started skipping nominated by her her weekly injections patients and is deeply of methotrexate, her touched by that. “I Crohn’s symptoms want the young flared up and, people I see to realise although she was in they can have full, denial to her mother Olivia: “loud and happy lives which happen about the missed bubbly at school” to have IBD tacked on the medicine, Vikki hit the nail end,” says Vikki. “We help them take on the head. “She understood how I the lead, and encourage them to was feeling and helped me to get back speak to their schools to establish the on track,” says Olivia. “She spots when support they need to allow them to I am feeling down and sends me a text make the most of their education.” or email to give me encouragement.

That may mean being able to leave She knows me so well.” class to go to the toilet, special Vikki does all she can to encourage understanding when flare-ups bring her patients to continue to go to tiredness and poor timekeeping, and school. “Their education is important, support to take medicines. In Vikki’s regardless of their IBD. As healthcare experience it is in secondary schools, professionals and teachers we have to rather than primaries, that most work together to do everything we problems arise. “When you have lots of can to make that as easy as possible.” teachers and busy curriculums, it can Olivia acknowledges that growing be harder to coordinate,” says Vikki. older and increasing in confidence is “But there are ways of making it making her Crohn’s easier to live with. happen. I urge my patients to get in For her, not having to continually touch with their guidance teacher: if explain how she feels is important. “I there’s something that might affect am normally a loud and bubbly person you, then they need to know.” at school, so if I am grumpy and quiet Based at the Royal Hospital for people notice,” she says. “I never use Children, Glasgow, Vikki and her my Crohn’s as an excuse, and I appreciate it when my teacher says ‘we all have off days’. More than anything I just want to be normal.” should consult health conditions. The Health For now, Olivia’s beloved PE and social care Conditions in Schools lessons are on hold because of the professionals, pupils Alliance’s guide to IHPs is nasogastric feeding tube. But she at medicalconditions and parents to make knows they will resume and she will sure children are atschool.org.uk be supported to pursue the Higher PE effectively supported. qualification (equivalent to A-Level) l Crohn’s and Colitis that she has set her heart on. “I am l The act encourages UK’s information sheet looking forward to what comes next,” for schools, ‘Children and the use of individual she says. “Crohn’s isn’t going to get in young people with IBD: healthcare plans the way.”

(IHPs), setting out the A guide for schools’, is at support required by pupils www.crohnsandcolitis.

FOR MORE INFORMATION with chronic health org.uk How well is your school doing? Let us know your

I NEVER USE MY CROHN’S AS AN EXCUSE. MORE THAN ANYTHING I JUST WANT TO BE NORMAL medical conditions should be properly supported so that they have full access to education, including school trips and physical education. It stipulates governing bodies must ensure schools have arrangements in place to support pupils with medical conditions, and school leaders

experience at ppr@crohnsandcolitis.org.uk

CONNECT • SPRING 2016 • 23

GET BY WITH A LITTLE HELP Using a Crohn’s and Colitis UK confidential support service allows you to talk to someone who has a deep knowledge of IBD

H

aving an Inflammatory Bowel Disease is like riding a rollercoaster: one minute you are up, the next you are down.

These are the words of someone who knows just how important it is to talk to an empathetic person during those times when the rollercoaster swoops low – not only do they have IBD, they are a trained helpline volunteer, too.

A team of people is on hand across Crohn’s and Colitis UK’s four support services, ready to offer the 24 • SPRING 2016 • CONNECT

confidential help you need to ride through the difficulties of living with a chronic bowel condition.

Such is the demand for information and support that an estimated 450 people call the main helpline, the Information Service, each month. This service is run by an in-house team of six staff, who also answer email queries and Facebook messages.

Last year, the opening hours of the service were extended and a new telephone number, free to use by landline and some mobile networks, was created. See ‘More

information’ on page 26. The Information Service helps more than 7,000 people a year, offering advice on symptoms, medication, diet, benefits and employment.

Additionally, there is the volunteerrun Crohn’s and Colitis Support, a listening service delivering emotional assistance, as well as a separate Parent to Parent support service.

Lastly, the Disability Benefits Service can help with queries about Disability Living Allowance and Personal Independence Payment.

Samantha Edmundson, the

SHUTTERSTOCK

WORDS GEMMA BRIGGS

SUPPORT

The charity offers support on Facebook

helplines manager, says a survey was carried out last year of people using the information line and Crohn’s and Colitis Support. “It showed that 73% of people using the service were female and 27% were male, and the average age was 48,” she says. “All of the services are open to anyone who is affected; it could be a relative or friend. We do not have access to medical records and we are not medically trained, but we all have an understanding of IBD.” Adapting to meet the needs of younger generations, who often

THE INFORMATION SERVICE HELPS MORE THAN 6,000 PEOPLE A YEAR prefer to use different forms of communication, has been an important part of developing the support services.

“We find younger people are using Facebook and email, and we have seen an increase in the number of

emails in the past few years,” says Samantha. She explains Crohn’s and Colitis UK hopes to integrate the four helplines, easing any confusion about which one callers should use. It is clear the team are focused on strengthening and growing the invaluable support they offer.

“One of the of the key aims of the survey was to find out whether people felt better informed and less isolated after using the services,” says Samantha. “It showed that 89% of people who called the information line felt better informed, and up to CONNECT • SPRING 2016 • 25

SUPPORT

WHICH HELPLINE DO I NEED? GENERAL INFORMATION I need general information on topics such as symptoms and medication, benefits and employment rights.

WHICH HELPLINE SHOULD I USE? The Information Service.

WHEN IS IT OPEN? From 9am to 5pm, Monday, Tuesday, Wednesday and Friday, and 9am to 1pm on Thursday. People calling outside core hours hear a message inviting them to leave a message or request a call back. Call backs are made usually on the same or the following day.

WHAT NUMBER DO I CALL? 0300 222 5700.

This should cost the same as any call to an 01 or 02 number, and will be included in any minutes package.

1

80% felt less isolated as a result of calling. Often it’s about an opportunity to talk to someone who really understands this condition.”

The roots of this support network lie in the efforts of Gillian Thomas, the guest editor of Connect, who is an IBD counsellor at the Royal Berkshire.

In the 1980s, along with Lady Juliet Bingley, Gillian helped create a telephone support service offered by the National Association for Colitis and Crohn’s, the body that later became Crohn’s and Colitis UK. “We understood that talking to a trained contact [volunteer] was what people really needed,” says Gillian.

Her work with the support service led her to look at ways of helping people for whom a telephone conversation would not be enough.

“I carried out one of the first counselling PhDs in the country and that helped gain funding from the Department of Health for a nationwide project,” she explains. “It was called the NACC Counselling Research Project and we put counsellors in several gastroenterology units throughout the country. It showed counselling provided enormous value.”

Assessing the psychological side of a patient’s wellbeing is part of the IBD Standards. As Gillian says: “Having had the psychological hurts attended to, doctors are better able to work on the physical hurt.” With few hospitals offering IBD counselling, the support services provided by Crohn’s and Colitis UK are a crucial source of information, support and encouragement.

“I’m lucky that, after 30 years, I still 26 • SPRING 2016 • CONNECT

WHAT NUMBER DO I CALL? Appointments are booked through the Information Service on 0300 222 5700.

DISABILITY BENEFITS I need advice on applying for Disability Living Allowance (DLA), Personal Independence Payment (PIP) or Attendance Allowance.

WHICH HELPLINE SHOULD I USE? Disability Benefits Service.

WHEN IS IT OPEN? Appointments are available one afternoon and one evening per week to speak to a volunteer on the phone.

PARENTS I need to speak to a parent volunteer about my child with IBD, aged 25 and under.

WHICH HELPLINE SHOULD I USE? Parent to Parent.

WHEN IS IT OPEN? Thirty-minute appointments are available one afternoon and one evening per week.

WHAT NUMBER DO I CALL? Appointments are booked through the Information Service on 0300 222 5700.

3

EMOTIONAL SUPPORT I need a listening service for emotional support.

WHICH HELPLINE SHOULD I USE? Crohn’s and Colitis Support.

WHEN IS IT OPEN? Monday to Friday from

4

2

I’M LUCKY THAT, AFTER 30 YEARS, I STILL FEEL PASSIONATE ABOUT HELPING PEOPLE WITH IBD

You can access different helplines for support

feel passionate about helping people with IBD,” she says. Thousands of people across the UK are fortunate to have the dedication of Gillian – and of helpline staff and volunteers.

FOR MORE INFORMATION The new number for the Crohn’s and Colitis UK Information Service is 0300 222 5700. You can also email info@crohnsandcolitis.org.uk or message the Crohn’s and Colitis UK Facebook page fb.com/crohnsandcolitisuk

PAUL STUART; SHUTTERSTOCK

IBD counsellor Gillian Thomas

1pm to 3.30pm and 6.30pm to 9pm. There is no answerphone for this service.

WHAT NUMBER DO I CALL? 0121 737 9931.

YOUR VOICE

OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

ON THE CREST OF A WAVE

University student Emma Lister cut through choppy seas to raise £7,500 for Crohn’s and Colitis UK with a successful solo Channel swim, writes Gemma Briggs

A

t around 12.15am last August, Emma Lister reached the beach at Calais – completing her first solo cross-Channel swim and raising £7,500 to help fund Crohn’s and Colitis UK’s vital work.

Emma, 21, from Warlingham in Surrey, had set off from Shakespeare Beach, Dover, battling strong winds and choppy seas to complete the 22.5-mile swim in 17 hours and 39 minutes.

Swimming the Channel had been a long-held ambition for Emma, who

studies at the University of Aberdeen. Her sister Katie’s battle with Ulcerative Colitis (UC) had inspired her to fundraise for the charity.

“This has been the toughest challenge I have ever done and I am ecstatic to have succeeded,” said Emma. “There were times

I thought I was never going to make it and France didn’t seem to get any closer. I hadn’t anticipated such high waves and strong winds, which hampered my progress. I am so grateful for the many messages of support and congratulations, and for the donations which

I HADN’T ANTICIPATED SUCH STRONG WINDS AND HIGH WAVES

have far exceeded my target of £5,000 for Crohn’s and Colitis UK.” Emma joins an elite club of fewer than 1,500 solo swimmers (36.1 per cent of them women) to have swum the Channel.

Katie was diagnosed with UC aged 17 and, following surgery, studied at Durham University. She works as an administrator at the Rugby Football Union’s Twickenham headquarters.

UP FOR A CHALLENGE? Go to www.crohnsandcolitisuk.org/ events to make a difference while doing something amazing CONNECT • SPRING 2016 • 27

YOUR VOICE

OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

THIRTY YEARS A SUPPORTER

Grace Warnock, who has Crohn’s Disease, with her proposed sign

A

veteran supporter of Crohn’s and Colitis UK bid farewell after being involved in the charity for three decades.

Iolanda Di Paola made her farewell speech to the group’s faithful at the autumn fundraiser of the South Manchester Group (SMG).

The event, at the Alderley Edge Golf Club in Cheshire in November, raised £880 for the charity. Supporters enjoyed a meal and a raffle, while there were games and a balloon man for the children.

Georgina, Tom and Audrey

POLITICIANS PRAISE TOILET SIGN CAMPAIGN SCOTTISH PARLIAMENT VOICES SUPPORT FOR SCHOOLGIRL’S PLEA

A OPEN DAY AT ST MARK’S

C

rohn’s and Colitis UK staff members and volunteers attended an open day at St Mark’s Hospital and Academic Institute, London, to give out IBD information. Pictured (left to right) are North-West London Group volunteers Georgina Marmoy, Tom Hough and Audrey Thomson. St Mark’s is a specialist bowel hospital.

28 • SPRING 2016 • CONNECT

campaign by a 10-year-old schoolgirl for better signage on toilet doors has been praised by members of the Scottish Parliament.

Grace Warnock, who has Crohn’s Disease, designed a door sign that would include people who do not have an outwardly visible disability.

She wants to highlight that disabled toilets are not just for people who use a wheelchair, and would like to see her sign on

WORK NEEDS TO BE DONE TO ACHIEVE EQUITABLE ACCESS

accessible toilets throughout Scotland and the rest of the UK. Labour MSP Iain Gray has given Grace, from East Lothian, his backing.

He praised her in the Holyrood chamber during a members’ debate for World Toilet Day, a campaign to improve global sanitation.

The MSP for East Lothian said: “The debate enabled me to put Grace's campaign on the agenda at Holyrood, as well as highlight the work that still needs to be done globally to achieve access to adequate and equitable sanitation and hygiene for all.”

FOR MORE INFORMATION To find out more about the campaign, visit www.facebook. com/gracessign10

JUST ASK PROFESSOR DAVID RAMPTON Professor of gastroenterology at Barts and the London NHS Trust

THE EXPERTS ANSWER YOUR QUESTIONS

DR BARNEY HAWTHORNE Consultant gastroenterologist at the University Hospital of Wales, Cardiff

KATIE KEETARUT Dietitian at University College London Hospital

Samples ready for analysis

WHAT DO BIOPSY RESULTS SHOW?

Q

“What do colonoscopy biopsy results show and what do they mean?

Can they show active Inflammatory Bowel Disease (IBD) and what are the signs?”

PROF RAMPTON SAYS

Colonoscopic biopsies are tiny samples, usually about the size of a small fingernail clipping, taken from the lining (mucosa) of the lower small bowel (terminal ileum),

colon and/or rectum using special flexible forceps passed through the colonoscope. Taking biopsies is very safe, and complications – of which bleeding is the most common – are rare, occurring in fewer than one in 1,000 cases. Fresh biopsies are immediately placed in a small tube containing formalin (a type of preservation fluid used in histopathology) and then processed in the pathology laboratory before being examined

under a microscope by a doctor (pathologist) with expert knowledge of the microscopic aspects of gut disease.

The pathologist then issues a written report to the gastroenterologist describing any abnormalities found and what they might mean in terms of diagnosis, disease activity or disease complications.

This report is stored in the patient’s case records and the original biopsies themselves kept in the pathology archive in case

they are needed for further examination at some stage in the future.

Biopsies are taken during colonoscopy for a wide range of reasons, as indicated above, and can give a lot of information which helps in the patient’s care.

MAKING THE DIAGNOSIS First of all, biopsies are taken to make or confirm a diagnosis. For example, in a patient sent to hospital for assessment or with diarrhoea, the colonoscopist

CONNECT • SPRING 2016 • 29

YOUR VOICE

JUST ASK

THE EXPERTS ANSWER YOUR QUESTIONS

Do combination therapies work?

may see changes down the scope which suggest inflammation, for example redness or ulceration, but may be unsure as to whether the appearances are due to Ulcerative Colitis (UC), Crohn’s Disease, an infection or drugs which the patient may be taking.

Biopsies will often point to one alternative as being the likeliest, depending on what the innermost cell layer of the bowel (epithelium) looks like, and on the distribution (ie where the inflammation is found) in the ileum and colon of the inflammation, and its microscopic characteristics.

For example, the increased number of inflammatory cells in the inflamed bowel extends more deeply into the bowel

30 • SPRING 2016 • CONNECT

normal-looking areas of mucosa to look for precancerous changes.

These microscopic changes are called dysplasia, and are characterised by abnormal-looking epithelial cells and by the irregular way in which the epithelial layer is arranged. Because of the now widespread use of surveillance colonoscopy, it is fortunately fairly rarely that lumps are found at colonoscopy which biopsies show to be cancerous.

wall and is more sporadically distributed (what doctors call ‘skip lesions’) in Crohn’s Disease than in UC. Furthermore, in some patients with Crohn’s Disease but not with UC, clusters of inflammatory cells called ‘granulomas’ are found in the biopsy.

more damage to the epithelium and its infoldings (crypts). In some patients with active IBD it is important to rule out concurrent infections, and biopsies can help do this, for example in patients with concurrent CMV (cytomegalovirus) infection.

ASSESSING IBD ACTIVITY Once a diagnosis has been made, biopsies during the course of the disease can help in the assessment of its activity, although usually the colonoscopist can assess this easily during the procedure itself.

To the pathologist, increased activity is shown by the presence of a greater number of inflammatory cells in the bowel wall, and by

LOOKING FOR PRECANCEROUS CHANGES People with very longstanding Colitis caused by either UC or Crohn’s Disease are at slightly increased risk of developing colorectal cancer.

These patients are offered regular ‘surveillance’ colonoscopies at which biopsies are taken of any abnormal areas such as polyps and/or of

PUTTING IT ALL TOGETHER Colonoscopic biopsy plays an essential part in the management of patients with IBD. Because of this, many hospitals hold regular meetings between gut pathologists and the clinicians looking after people with IBD to discuss the biopsy results of individual patients and how their treatment might need to be adjusted as a result of the microscopic findings.

THE OUTCOMES ARE BETTER …

Q

“Why does my doctor want me to take an immunosuppressant such as methotrexate along with my infliximab? Will the methotrexate make the infliximab work better?”

Infliximab is an antibody against TNF (tumour necrosis factor).

Antibodies are proteins, and when injected into the body, can be recognised as ‘foreign’

DR HAWTHORNE SAYS

OUTDATED TERMINOLOGY

Q

”I have been advised to follow a low-residue diet by my gastroenterologist.

What does this mean? Is it the same as a low-fibre diet?”

Typically, a low-fibre diet is defined as a variation of a normal diet to include less than 10–15g of fibre daily. It is usually recommended to avoid foods high in insoluble, or indigestible, fibre including nuts, seeds, stringy vegetables, fruit skins, pith, dried fruit and high-fibre breakfast cereals such as muesli or granola.

A ‘low-residue’ diet is often recommended postoperatively and can be defined to include a low-fibre diet and/ or restriction of other dietary items that can increase bowel activity, including dairy and high-fat foods.

A low-fibre diet is often recommended in stricturing Crohn’s Disease so that food passes through narrowed sections of bowel more easily.

There is no evidence that excluding milk or dairy products is helpful, and may decrease nutrient intake, particularly calcium, leading to nutritional deficiencies.

Risk of osteoporosis and hence calcium requirements are greater in Crohn’s Disease compared to the general population.

A ‘low-residue diet’ is outdated due to its ambiguous and inconsistent definitions, and should be replaced with the term low-fibre diet.

KATIE KEETARUT SAYS

Excluding milk may lead to nutritional difficulties

by our immune systems.

The immune system responds by developing antibodies against the drug (itself an antibody). This can lead to reduction in levels of infliximab, as it is cleared more rapidly from the circulation. Because infliximab suppresses the immune system, this process is inhibited to some extent by taking methotrexate, azathioprine or mercaptopurine (immunomodulators) at the same time as infliximab as it helps prevent antibody development more effectively, although it doesn’t totally prevent it.

There is good evidence from big trials that the outcomes are better (more patients respond,

and the benefit lasts longer) when the combination therapy of infliximab plus immunomodulator is given.

What is not quite clear is whether it is necessary to continue the combination all the time infliximab is given, and there are studies ongoing to see whether stopping the immunomodulatory after one or two years results in any loss of effectiveness; this is what many centres currently do, on the basis that the minimum amount of immunosuppressive drugs is safest.

It is also worth noting that the evidence of greater benefits of using combination therapy when giving adalimumab is not quite as

strong as that for infliximab combination therapy, although many centres do use adalimumab combination therapy, in the hope that benefit is maximised, until the evidence is really clear.

Development of antibodies against anti-TNF drugs is one of the main reasons why patients lose response after initial benefit (secondary loss of response).

Blood tests are gradually becoming available to measure drug levels and the anti-drug antibodies.

This can help IBD teams decide whether it is better to switch to a different drug when response is lost (if antibodies are present), as opposed to giving more of the drug (if levels are too low but there are no antibodies).

CONNECT • SPRING 2016 • 31

YOUR VOICE

Charlotte Guinea in a chilly Vienna

TAKE HEED

TRY THESE NEW-EDITION PUBLICATIONS TO HELP MAKE LIFE WITH IBD EASIER BIOLOGICAL DRUGS One of two new publications by Crohn’s and Colitis UK, Biological Drugs gives an overview of the main biological drugs used to treat IBD. Importantly, it looks in detail at ‘biosimilars’, a new type of biological drug now on the market.

‘I REPRESENTED THE UK AT A EUROPEAN IBD CONFERENCE’ “I was invited by Crohn’s and Colitis UK to represent my country at an international conference in Vienna,” writes Charlotte Guinea.

“The aim was for people with IBD from across Europe to help assess patient guidelines issued by medical professionals.

Having been diagnosed with Ulcerative Colitis (UC) at 17, I was hopeful my experience would help.

“Around 50 people with IBD joined medical professionals at the European Crohn’s and

DIRECTORY

32 • SPRING 2016 • CONNECT

Colitis Organisation (ECCO) conference in November.

“We were divided into groups – one including people with Crohn’s, the other those with UC. Joined by medical professionals, we looked at patient guidelines and replaced most of the medical jargon with statements easier for patients to understand.

“The day was a great success for IBD patients and medical professionals from across Europe.”

FOR MORE INFORMATION www.ecco-ibd.eu

MANAGING BOWEL INCONTINENCE IN IBD The second of Crohn’s and Colitis UK’s new publications looks at ways in which you can manage the risk of incontinence physically, practically and emotionally.

ADALIMUMAB This information leaflet aims to answer common questions you may have if you have been prescribed adalimumab (also known as Humira) to treat your Crohn’s Disease or Ulcerative Colitis.

STAYING WELL Inflammatory Bowel Disease (IBD) is a very individual condition.

Symptoms vary hugely and

INFORMATION SERVICE Trained information officers provide callers with clear, balanced information on issues relating to Inflammatory Bowel Disease (IBD). Call 0300 222 5700.

while some people go into remission and remain well for years, others have frequent flare-ups. Living with a longterm illness like IBD can affect you physically and emotionally. This information sheet looks at factors that may help you to stay well more of the time.

BONES AND IBD As we grow older our bones become thinner and more fragile. Having IBD may make developing weaker bones more likely.

This information sheet provides advice for anyone with IBD who may be worried about developing fragile bones. It looks at why this might happen, and developments in prevention, diagnosis and treatment.

METHOTREXATE This information sheet answers some common questions about taking methotrexate medication to treat IBD. FOR MORE INFORMATION www.crohnsandcolitis.org.uk/ publications

CROHN’S AND COLITIS SUPPORT A supportive listening service provided by trained volunteers skilled in providing emotional support to anyone who needs a safe place to talk about living with IBD. Call 0121 737 9931.

NOTES TO SELF MEDICAL APPOINTMENTS 1 Check the date,

time and venue Read over the appointment letter so I’m certain of the details and take it with me on the day so I can find the right department.

SHUTTERSTOCK

2 Plan how I will get there Make sure I leave plenty of time so I don’t run late or get flustered if there are delays on the roads or public transport.

3 Put any letters in my bag Remember to take any medical notes that

the doctor might want to see, such as test results, letters and details of any medication I’m taking.

4 Be prepared

to wait Some clinics, especially with senior consultants, can often run behind. Take something to read to keep myself occupied.

5 Write a list of

questions It’s easy to forget things during an appointment and so I need to ensure I use the time to ask everything I want to.

DISABILITY BENEFIT SERVICE Call the Information Service to arrange a telephone appointment with a trained volunteer for help with Disability Living Allowance, Personal Independence Payment or Attendance Allowance.

6 Prioritise my

concerns Think about the most important things to discuss and tackle these first – less crucial questions can wait.

7 But do mention the

little things Small symptoms may seem irrelevant to me, but the doctor could need to know them so I won’t omit things.

9 Understand the

next steps Check that I know what the plan is before leaving and when to expect tests to happen or new treatment programmes to begin.

10 Ask about support

Find out if anyone else can help me before my next appointment, such as an IBD nurse, counsellor or local support group.

8 Question the doctor

I shouldn’t feel embarrassed about asking for an explanation of anything I don’t understand, such as what a test is for.

PARENT TO PARENT Talk to another parent who has a child with IBD. Telephone appointments can be made by calling the Information Service.

FOR MORE INFORMATION www.crohnsandcolitis.org.uk/ about-inflammatory-boweldisease/publications/ my-crohns-and-colitis-care

MEMBERSHIP

01727 734465 FUNDRAISING

01727 734485

CONNECT • SPRING 2016 • 33

MY LIFE

‘AT TIMES I FEEL UNWELL AND HAVE TO MODIFY MY DUTIES’

As a firefighter, Sharron Finch is used to risk, but one of her biggest challenges is closer to home I was diagnosed with Crohn’s Disease on my 40th birthday. A couple of days earlier I had not felt well and I got rushed into hospital. The next day – my birthday – I had to have surgery, a partial ileal bypass.

years ago and I really delved into charity to cope with that and the Crohn’s. I’ve done a skydive, the London Marathon and the Three Peaks walking challenge.

I’m thinking of a new challenge to do this year.

I’ve got to feel good in myself first, though.

I’m 46 now and I have to be careful what I eat.

I avoid spicy food and it is trial and error as sometimes things don’t agree with me.

I have a son who is 19 and a daughter who is 16.

It’s hard being a parent with an illness like Crohn’s.

If my children have friends round and I have an attack of the tummy pains, they know to take their friends out. Little things like that are really supportive. It is a worry that the kids are going to get Crohn’s, too.

I used to be on medication, but I am trying without it at the moment. I don’t want to be on tablets for the rest of my life. I’ve just had a colonoscopy and I’ve had a little procedure done. The lining of my stomach is scarring and it will never be the same. It’s upsetting.

I’ve been a firefighter for 15 years. It’s a tough job, a male-dominated environment. Sometimes people point out if I’m bloated, although they are not doing it to be cruel.

At work we all bring our own food and we eat together so my diet isn’t a problem. But if my colleagues want to order a curry, I can’t join in.

Fatigue is a major symptom.

At first, I thought it was my age, then I discovered it was part of the condition. It makes things hard at work.

34 • SPRING 2016

BECAUSE YOU CAN’T SEE THE DISEASE, THEY THINK YOU LOOK FINE, BUT THEY DON’T KNOW WHAT GOES ON INSIDE At times I feel unwell and have to modify my duties. If I’m really ill I stay at home.

Perhaps some people think you can use Crohn’s as an excuse to be off work, but they don’t understand.

You have to laugh it off. But if someone says “you

shouldn’t be eating that”, it really gets to me. Because you can’t see the disease, they think you look fine, but they don’t know what goes on inside.

I’ve been an active charity supporter for years. I lost my mum four and a half

Sometimes I come home and the cramps and pain are so bad. To help me feel better, I get out and walk the dog or go for a bike ride in the fresh air.

When I feel well it just makes me nicer as a person. I know it sounds silly, but when I feel good, I do all the housework.

Generally, my personality comes out a bit more.

LIVING WITH IBD See our videos at www.crohnsandcolitis .org.uk/IBDliving

GRAB YOUR TRAINERS!

Join us for exercise, a great day out, an opportunity to meet other members and help us make a difference to people living with IBD. To sign up, or for more information on your local walk, see the flyer included with this magazine or visit www.crohnsandcolitis.org.uk/walkit or call 01727 734485

LONDON RUTLAND MANCHESTER EDINBURGH SWANSEA AND YORK

WALK IT FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER

JOIN US FOR THE 2016

VENUE King’s College, London DATE Saturday 4 June 2016 TIME 10-11.30am BREAKFAST ROLLS FROM 9.30am

ANNUAL GENERAL MEETING With a presentation of achievements and awards.

Meet other members, volunteers, medical professionals and the staff and trustees of the charity. Help us to celebrate our many fantastic achievements and find out our plans for the future. You are also invited to join our London Walk afterwards from the nearby Embankment Gardens, just five minutes away.

Register your interest in attending by emailing meetings@crohnsandcolitis.org.uk with AGM in the subject line and your membership number, if known, in the email body.

A full AGM programme and formal notice of meeting will be published on our website at www.crohnsandcolitis.org.uk from 6 May 2016, including all proposals for trustee elections. A proxy voting form will be available to those who are unable to attend. If you would prefer to receive all registration and AGM details by post, please contact Gill Lamb on 01727 734495 or by writing to 45 Grosvenor Road, St Albans, Herts AL1 3AW

WALK IT

LONDON SATURDAY 4 JUNE JOIN US AFTER THE AGM