Connect Summer 2018

PLAN, PACK AND GO: HOLIDAY CHECKLIST P7

HELPLINE VOLUNTEERS NEEDED P4

CONNECT Summer 2018 / No 90 / crohnsandcolitis.org.uk

RESEARCH PROGRAMME SEEKS RECRUITS

Your membership magazine

9 TIPS TO OVERCOME STRESS

P14

P19

‘I FOUND AN ESCAPE IN MUSIC’ P20

FASTING WITH IBD HOW OMAR MALICK STAYS TRUE TO HIS FAITH

‘ PARKOUR KEEPS ME POSITIVE’ OLLY’S ACROBATICS HELP CURB HIS FLARE-UPS

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FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER

DIRECTORY HELPLINE Our helpline is a confidential service providing information and support to anyone affected by Crohn’s Disease, Ulcerative Colitis or other forms of Inflammatory Bowel Disease.

OUR TEAM CAN: ● help you understand more about IBD, diagnosis and treatment options ● provide information to help you to live well with your condition ● help you understand and access disability benefits ● be there to listen if you need someone to talk to ● put you in touch with a trained support volunteer who has personal experience of IBD CONTACT US BY: Telephone: 0300 222 5700 Monday, Tuesday, Wednesday and Friday – 9am to 5pm Thursday – 9am to 1pm Email: info@crohnsandcolitis.org.uk LiveChat: crohnsandcolitis.org.uk/livechat MEMBERSHIP

01727 734465 FUNDRAISING

01727 734485

4 2 • XXXXXX 20XX • CONNECT

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

crohnsandcolitis.org.uk

WELCOME

On the cover: Omar Malick shares how he approaches Ramadan with Crohn’s. Read his story on page 24.

ALASTAIR LEVY

WE ARE LED

BY THREE CORE VALUES

‘IT’S ALWAYS A BIT OF A NIGHTMARE AT SECURITY’

I

This issue’s guest editor Lizzy Barlow says preparation is key for travelling with IBD – and getting a letter to explain all the needles ...

was diagnosed with Crohn’s Disease when I was 18. I think what triggered it was my mum passing away. Three months later I travelled to India to do some charity work.

On the journey home, I thought I had succumbed to the mandatory Delhi belly.

The experience definitely did not put me off travel – although now there’s a lot more preparation I have to do. I always make sure I have good insurance, and my Can’t Wait Card has been really useful (page 6).

I take Humira, which I inject myself with once a week. I went to Australia for six months, so I took quite a lot of it. It had to be kept cool, which is a nightmare on the plane.

I had a letter from the doctor, too, because it’s always a bit of a challenge at security when you turn up with a hundred needles on you.

The IBD Passport (ibdpassport.com), run by specialist IBD nurse Kay Greveson, is very useful and I always recommend it to people before they travel.

It’s interesting to see discussions going on about whether IBD could be covered by the Blue Badge scheme (page 8). I travel a lot

within the UK too. We’ll get 10 minutes into the journey and I’ll need to go – it’s not always easy to find a parking space.

College stress could have been a factor – along with everything else – in my Crohn’s.

I think a lot of young people with IBD experience flare-ups around exam time, and it’s good to see how Olly Powell is dealing with that stress using parkour (page 16). I have found that having a hobby you can really sink your teeth into can make a huge difference to symptoms.

When it came to my own exams, I tended to speak to people before I went in to explain that I might need to get up. I’ve found with anything, if you talk to people and let them know, most of them will understand.

Lizzy Barlow

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 • SUMMER 2018 • 3

Helpline volunteers needed

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Do you have some regular spare time and would like to support people affected by Inflammatory Bowel Disease (IBD)?

Crohn’s and Colitis UK is currently recruiting volunteers for its helplines, which provide support for anyone who needs a safe place to talk about living with Crohn’s Disease or Ulcerative Colitis.

CROHN’S AND COLITIS UK HAS THREE PHONE LINES STAFFED BY VOLUNTEERS: l Crohn’s and Colitis Support l Parent to Parent (volunteers must be a parent of a child with IBD) l Disability Benefit Service (you do not need to have personal experience of IBD to volunteer on this service, but knowledge of the benefit system is a must) ARE YOU…?

Reliable Flexible Available at least three hours

per month Able to help out at short notice

… with access to a telephone and computer

crohnsandcolitis.org.uk/helpline-volunteers

4 • XXXXXX 20XX • CONNECT

SUMMER 2018

CONTENTS

#crohnsandcolitisuk

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

I DON’T WANT TO SPEND MY LIFE WORRYING

16 CONNECT Our address is: Crohn’s and Colitis UK 45 Grosvenor Road St Albans Hertfordshire AL1 3AW connect@ crohnsandcolitis.org.uk General enquiries info@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 Fiona McKinlay fiona.mckinlay@ thinkpublishing.co.uk Editor for Crohn’s and Colitis UK Jaina Shah Editorial board David Risser, Juliet Chambers, Dan McLean, Caroline Reed Contributing editor Sian Phillips Medical editor Dr Philip Smith Editorial assistant Jonathan McIntosh Sub-editors Sam Bartlett, Sean Guthrie Designers John Pender, Andrew Bell Published by Think on behalf of Crohn’s and Colitis UK Think Suite 2.3, Red Tree Business Suites, 33 Dalmarnock Road Glasgow G40 4LA www.thinkpublishing.co.uk

MICHAEL POWELL, ALASTAIR LEVY

ISSN 2059-8408

NOTEBOOK 6 Pack your suitcase How the toilet sign campaign and Can’t Wait Card can help ease your holiday worries 8 Watch this space Could the Blue Badge scheme change to include people with IBD?

FEATURES

20

YOUR VOICE 28 Where there is a will ...

Gillian explains why she’ll leave a gift in her will 33 Just ask Experts answer your queries 34 My life How an ileostomy offered Rachel Green new horizons

24

YOU CAN GET INVOLVED Fundraise, volunteer or campaign with us

16 On the flip side How parkour helps 18-year-old Olly Powell stay positive as he tackles the stress of A-level exams with UC 20 Creative flares Murray Macleod from rock band The Xcerts, Gutted co-creator Liz Richardson and artist Hannah Thomas tell how IBD has affected, influenced and inspired their work 24 Keep the faith Omar Malick shares how he approaches Ramadan with Crohn’s and offers his tips for fasting

See crohnsand colitis.org.uk/ get-involved

CONNECT • SUMMER 2018 • 5

NOTE BOOK NEWS FROM AROUND THE UK

HAPPY HOLIDAYS TOILET SIGNAGE AND CAN’T WAIT CARDS MAKE TRAVEL WITH IBD A LITTLE EASIER

T

hinking about travel can be a worrisome business for those living with IBD. Things should be a little easier this summer thanks to good progress in Crohn’s and Colitis UK’s Travel with IBD campaign, which is striving to have “Not every disability is visible” toilet signage installed in travel hubs.

WHO’S ON BOARD? NOT EVERY DISABILITY IS VISIBLE SIGNAGE IS IN PLACE AT: 6 • SUMMER 2018 • CONNECT

Around 85% of hubs targeted – including airports and service stations – engaged positively with the charity and 48% have introduced new signs.

“Since we launched the campaign in August 2017, almost 3,000 people have taken part, emailing

AIRPORTS l Aberdeen International l Belfast International l Birmingham International l Bournemouth l East Midlands l Edinburgh l Glasgow International l Leeds Bradford l London Gatwick, Heathrow and Stansted l Newcastle International l Southampton

more than 50,000 times to the 27 travel organisations to encourage them to change their signage,” says Andy McGuinness, campaigns manager for the charity.

“We’re delighted with the response the campaign has had. Members have really got on board with this and we know the signage is already tackling stigma and making a big difference to the lives of those living

with IBD, who need easy access to toilets to support them with their condition.”

Crohn’s and Colitis UK also engaged with the travel hubs to train staff to improve understanding of IBD and increase acceptance of the charity’s Can’t Wait Card.

The card is available to members of Crohn’s and Colitis UK via the membership team on 01727 734465, and can be ordered in 29 different

RAIL STATIONS managed by lS cotRail lS outheastern Rail

SERVICE STATIONS managed by l Moto Hospitality l Roadchef ... with more following soon!

Newcastle airport signage

TRAVEL TIPS CHECKLIST PLAN, PACK AND GO

The Can’t Wait Card

languages, professionally translated and ideal for your holiday abroad.

During a holiday in the Hungarian capital Budapest, Paul used his Can’t Wait Card to access a toilet in a cafe.

He said: “Budapest has very few public toilets so the only options are hotels or independent cafes and bars.

I saw a little cafe and asked to use the toilet that says it’s for customers. When I showed my Can’t Wait Card

WE ARE DELIGHTED WITH THE RESPONSE TO THE CAMPAIGN

… Bingo! They couldn’t have been more obliging.”

The Travel with IBD campaign began after a survey of 1,776 people with IBD, conducted by Takeda UK Ltd, Crohn’s and Colitis UK and IBD Passport, found that 72% felt IBD limited their travel some to all of the time, 70% worried about toilet facilities while travelling and 28% had deferred, cancelled or changed a trip because of an IBD-related issue.

Crohn’s and Colitis UK are continuing to work with businesses to adopt the signage and accept the Can’t Wait Card.

Keep an eye on the website for more information over the coming months.

l Find out about insurance, vaccinations and malaria tablets before you book your holiday. l Obtain an EHIC card for travel in Europe. l Plan ahead so you can take enough medicines/ medical supplies to cover the whole time you will be away plus any possible delays. Double your supply if you can. l Check whether you need an import/export drug licence. l Get a copy of your prescription. l Ask your GP for a medical summary and a flare-up plan. If necessary, get these translated into the appropriate language(s). l Take details of your own doctor and IBD team, including phone numbers and email addresses. l Find out details of doctors in the places you will be staying (check the IBD Passport website). l Get a foreign-language Can’t Wait Card. l Check availability of toilet facilities on transport you will be using and, where

possible, book a seat near the toilet. l If flying, inform the airline of any special dietary requirements. l Pack your medication, any medical supplies and your emergency travel kit in your hand luggage and check with the airline for any product restrictions. l If you have a stoma, get a travel certificate from Colostomy UK or the Ileostomy and Internal Pouch Support Group (IA) and check whether supplies can be delivered to your destination. l Contact your hotel about en-suite toilets and laundry facilities, and any dietary requirements. l Research your destination so you know what to expect. l Just before you travel, be sure to eat foods that are unlikely to cause upset. l Ensure you follow good standards of food and water hygiene while away.

MORE TRAVEL ADVICE crohnsandcolitis.org.uk/ travelandibd

Preparation is key to success

CONNECT • SUMMER 2018 • 7

NOTE BOOK

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CASE BEING MADE FOR BLUE BADGES CHARITY RESPONDS TO CRITERIA-CHANGE PROPOSALS

N

inety-five per cent of people with Crohn’s or Colitis believe their conditions should be covered by the Blue Badge scheme. This was the finding of a survey

by Crohn’s and Colitis UK, which fed into the charity’s response to government proposals on changing the criteria for Blue Badge eligibility in England.

Blue Badge permits give drivers with disabilities, and their passengers, access to parking spaces near their destination, and may extend or exempt time limits.

Currently, to qualify for a Blue Badge you must have difficulty walking – but the government has said reform is necessary, as Blue Badges should not discriminate between physical and non-physical

GOVERNMENT SAYS REFORM IS NECESSARY 8 • SUMMER 2018 • CONNECT

disabilities. Instead, it is proposed that eligibility should be judged according to the difficulties in undertaking journeys, the barriers people face and the effect this has on people’s health and safety.

In its response to the consultation, Crohn’s and Colitis UK explained that crippling stomach pains and chronic fatigue – which are common symptoms in IBD – can make walking difficult, and experiencing an accident in public can have a devastating impact on someone’s mental wellbeing and their ability to leave their home.

“When many people think of Blue Badges they often think of people in wheelchairs or with walking sticks,” says campaigns manager Andy McGuinness. “However, ‘invisible’ disabilities such as Crohn’s or Colitis can have a significant and disabling effect on all aspects of the body and a person’s wellbeing.”

A Blue Badge makes parking simpler

SURVEY FINDINGS

4,000+ people responded to the Crohn’s and Colitis UK survey into the Blue Badge system

75%

of people surveyed said that they or a family member have had an accident in public because they couldn’t find parking in time to reach a toilet

PARTICIPANTS SAID: “Having Crohn’s causes pain and urgent need to use the toilet as well as fatigue.

Having a Blue Badge would mean not having to walk as far in pain and being able to go to the places you usually need to get to” “I have had many occasions when I couldn’t find a space nearby and ended up having to go home because I have soiled myself and it was too embarrassing to even clean myself … [It is] devastating and horrifying”

91%

of people who completed the survey said they (or their family member living with Crohn’s or Colitis) often struggle to go out regularly due to needing the toilet

Change is in the air

PRESCRIPTION CHARGE PUSH

PARLIAMENT LOBBIED ON FAILURE TO CHANGE EXEMPTIONS CRITERIA

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SHUTTERSTOCK, MATT CARDY / GETTY IMAGES, JULIAN CLAXTON / ALAMY STOCK PHOTO

rohn’s and Colitis UK, which co-chairs the Prescription Charges Coalition (PCC), joined other members to lobby MPs to get the government to review the list of medical conditions that are exempt from prescription charges in England.

Marking 50 years since the introduction of the prescription charge exemption criteria, MPs were invited to a lobbying event in Parliament on 23 May, where politicians heard the arguments for bringing in exemptions for people with long-term conditions such as Crohn’s and Colitis.

Jackie Glatter, health service development manager at Crohn’s and

Colitis UK, said: “The coalition’s report, Still Paying the Price, found a third of people with long-term conditions who pay for their prescriptions have not collected their prescriptions or skipped doses due to the cost.

This can have a huge impact – and could lead to admission to hospital.”

This is a false economy for the NHS, added Jackie. “New economic evidence highlights that extra treatment is likely to be a lot more expensive than the amount raised through charges.”

Members of the PCC also delivered to No.10 Downing Street a petition signed by more than 17,000 people, calling for an end to prescription charges for people with long-term conditions.

Prescription charges apply in England only

SUPPORT WITH YOUR PRESCRIPTION (in England*) l If you have a permanent stoma you can request a medical exemption certificate, which means your NHS prescriptions will be free. l A prescription prepayment certificate lets you get as many NHS prescriptions as you need for a set price. It costs £29.10 for three months or £104 for 12 months. l If you are eligible,

the NHS Low Income Scheme could help you pay for NHS prescriptions.

See the website below for details. *There are no prescription charges in Scotland, Wales and Northern Ireland. For information on the full list of medical and other exemptions, as well as applying for a PPC, visit nhs.uk/prescriptions

NEW CHAPTER FOR IBD REGISTRY

LONG-TERM STRATEGY AIMS FOR IMPROVED CARE The first UK-wide collection of IBD patient data has begun gathering information to ensure better care for people with Ulcerative Colitis and Crohn’s Disease.

The IBD Registry, an independent not-for-profit company, was launched by the British Society of

Gastroenterology, the Royal College of Physicians, and Crohn’s and Colitis UK. The organisation said collecting the information would help improve IBD patient care, allow the NHS to improve services and support research into the conditions.

Patients of hospitals participating in the IBD Registry are asked to give written consent for their data to be used. They are given a unique IBD Registry number to protect their anonymity. The information is then used by clinicians and statisticians who are

part of a registry team working to improve IBD care across the UK. FOR MORE INFORMATION ibdregistry.org.uk

CONNECT • SUMMER 2018 • 9

NOTE BOOK

RUN FOR IT

GETTING HIS JOG ON HELPED STEVE HOLNESS OPEN UP – AND RAISE MORE THAN £12K

M

usical director Steve Holness recently ran the London Marathon, raising more than £6,800 for Crohn’s and Colitis UK – on top of the £6,000 he raised running the race in 2017.

An associate musical director in the West End, Steve was diagnosed with Colitis in his early 20s and rediagnosed with Crohn’s in his 30s.

Now 41, he says fundraising for Crohn’s and Colitis UK has helped him open up about his condition.

“Before I did the marathon I didn’t talk about my Crohn’s,” he says. “If I was conducting a show and

I was in excruciating pain, I’d just say I had a bad tummy and try to hide it.

But as I needed sponsorship, I started to tell people about it – and we’d do a bucket collection at the end of shows, too. It’s actually so much easier now that the cat’s out of the bag at work and people know about my condition. It’s also amazing when we do collections how many people come up and tell me about their family member or friend who has Crohn’s.”

STEVE’S TIPS FOR RUNNING WITH IBD

Allow enough time to get ready. Before a long run, I’ll get up early to make sure I’ve eaten and that I can manage to go to the loo before heading out.

Be careful what you eat leading up to a race. As I work nights, I eat out a lot but I have learned not to try anything new the week before. You never know how your body will respond.

Do what you can to keep your energy levels up. Anyone with IBD knows that tiredness is a problem and since I’ve been on infliximab, it’s been especially difficult. I have

1

10 • SUMMER 2018 • CONNECT

2

3

Steve Holness taking part in the London Marathon

to drink a lot of coffee and take dry toast with peanut butter to eat mid-race to keep my stamina up. I use energy gels but it’s important to try out which work for you as some can cause a reaction. Do this well ahead of a big race so you’re not caught out on the day.

Keep hydrated. This is true for anyone running long distances but

4

if you have IBD then it’s especially important that you drink enough.

Always carry tissues with you. I learnt this from experience when I was caught short on a long run and could only find a public toilet with no loo paper. My partner Debbie had to pass me leaves from nearby bushes to use.

5

WILL YOU WALK IT?

IT’S NOT TOO LATE TO GET INVOLVED

READY TO RACE

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here is still time to sign up for the remaining WALK IT events of 2018. Register on the website or if registration is closed (due to proximity to the event) just turn up and register on the day to join the fun and walk a 5k or 10k route.

For a £14 fee for adults or £7 for children, participants receive a free WALK IT T-shirt and will have the opportunity to be a part of the Crohn’s and Colitis UK community while raising vital funds and awareness for these conditions.

At the Manchester event, Crohn’s and Colitis UK is combining WALK IT with a family day, complete with a big top, circus skills lessons and a clown show. There will also be Crohn’s and Colitis UK information officers on hand. Event villages for all walks open at 9.30am.

Why not sign up for a Crohn’s and Colitis UK sponsored place on a run or event? As well as WALK IT, there are plenty of opportunities to get active and raise awareness of Crohn’s and Colitis – and possibly raise funds, too.

Upcoming runs include the Great North Run in Newcastle (9 September) – the world’s largest halfmarathon – and London’s Royal Parks Half Marathon (14 October).

You could also sign up to run, walk or jog the Thames Path Challenge (8 to 9 September) or – if you’re adventurous – jump out of a plane for Crohn’s and Colitis UK by taking part in a sponsored skydive during the year.

TEA TOTAL

Manchester: 16 June St Michael’s Flags and Angel Meadow, Manchester M4 4TF Edinburgh: 24 June Princes Street Gardens, Edinburgh EH2 2HG Newcastle: 30 June Leazes Park, Newcastle NE2 4BJ Birmingham: 7 July City Centre Gardens, Birmingham B1 2NP

WALK IT has already taken place this year in Plymouth, Bristol, Swansea and London. Volunteers are still needed for the remaining events.

GET INVOLVED crohnsandcolitis.org.uk/walkit

Get your

BAKE IT

fundraising pack crohnsandcolitis. org.uk/bakeit

DID YOU BAKE IT FOR WORLD IBD DAY 2018?

FOR MORE INFORMATION crohnsandcolitis.org.uk/ fundraising

Listen to your body. This year I experienced excruciating pain while running a halfmarathon and had to slow right down. There’s no shame in knowing when enough’s enough.

6

Enjoy the afterglow. Even when you’re physically broken after a big run, it’s a great feeling.

WALK IT 2018

SHUTTERSTOCK

7

Crohn’s and Colitis UK celebrated World IBD Day on 19 May with a royal theme as it coincided with the wedding of Prince Harry and Meghan Markle.

Supporters were encouraged to hold their own royal-tea party or bake sale to raise awareness of IBD as well as funds for the charity.

Our sucessful PosterMaker also enjoyed a makeover fit for a queen, to enable supporters to share their story of what it is like to live with Crohn’s and Colitis.

CONNECT • SUMMER 2018 • 11

NOTE BOOK

BENEFIT ASSESSORS TRAINED SESSIONS AIM TO HELP PEOPLE WITH IBD RECEIVE SUPPORT

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WE’RE ON THE MOVE Crohn’s and Colitis UK is moving from St Albans to Hatfield, six miles east. From 6 August our new address will be: First Floor, Helios Court, 1 Bishop Square, Hatfield Business Park, Hatfield AL10 9NE

HOURS EXTENDED FOR LIVECHAT Crohn’s and Colitis UK’s Information Service has extended its hours. The LiveChat service now matches those of the Helpline: 9am to 5pm on Monday, Tuesday, Wednesday and Friday (except English bank holidays) and 9am to 1pm on Thursday.

Call 0300 222 5700 or visit crohnsandcolitis. org.uk/livechat for information on: l Medication l Symptoms l Tests and diagnosis l Dietary questions l Employment issues lW elfare benefits

12 • SUMMER 2018 • CONNECT

rohn’s and Colitis UK has played a key role in delivering training for health assessors who are responsible for completing Employment and Support Allowance (ESA) assessments. The aim is to improve health assessors’ awareness of the challenges of living with IBD, which will help people with Crohn’s and Colitis access the benefits they need.

“By improving the knowledge of these health assessors about what it’s like to live with IBD, we hope that people will have better outcomes when applying for benefits,” says Lauren PhillipsBrighouse, helplines manager at Crohn’s and Colitis UK.

Training for health assessors is vital

“We know that our members struggle to go through these assessments due to the fluctuating nature of IBD.” Four training sessions took place over the last couple of months in Bristol, Manchester, Edinburgh and London, with 250 to 300 participants at each session.

LIVING OUR VALUES NEW VIDEO LAUNCHED

Crohn’s and Colitis UK commissioned Disability Rights UK to research the barriers in the system for those applying for ESA and Personal Independence Payment.

This knowledge has informed how the charity supports members, including through its Information Service Helpline and for training the benefit assessors.

An inspiring new film featuring animated illustrations is putting the spotlight on Crohn’s and Colitis UK’s values.

The video highlights the values through people involved with the charity, from 10-year-old fundraiser Gabby and GP Kevin Barrett to chief executive David Barker and other members of the Crohn’s and Colitis UK team. Watch it, and read more about the people in it, at crohnsandcolitis.org.uk/ values

Find out how best to manage living with IBD

LEARN FROM THE EXPERTS IBD SPECIALISTS WILL SHARE KNOWLEDGE AT MANCHESTER AND LONDON SESSIONS

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rohn’s and Colitis UK’s Patient Education Programme offers patients the chance to learn more about IBD and to hear from specialists about living with and managing their condition. Each free event features expert speakers and a Q&A session.

should I expect from diagnosis and investigations?’ Lisa Fell, specialist gastroenterology dietitian, addresses the role of diet in IBD.

NIGEL COX, SHUTTERSTOCK, COFIANT IMAGES / ALAMY STOCK PHOTO

Sunday 3 February 2019 Consultant gastroenterologist Dr Simon Campbell speaks on drug treatments in IBD; Dr Paul Collins, consultant gastroenterologist at The Royal Liverpool and UPCOMING SESSIONS MANCHESTER Broadgreen University Cath Stansfield Novotel Manchester West Hospital NHS Trust, looks at Sunday 24 June 2018 new treatments; and Lynn Veronica Hall, nurse consultant Gray, IBD Nurse Consultant, in gastroenterology, and Khashia Wirral University Teaching Mulbagal, consultant obstetrician and Hospital NHS Foundation gynaecologist at Royal Bolton Hospital, Trust, looks at alternative talk about pregnancy and fertility. treatments for IBD.

(speaker TBC), and Dr Shuvra Ray, consultant gastroenterologist, Guy’s and St Thomas’ NHS Foundation Trust, discusses new treatments in IBD. Saturday 15 September 2018 Alex Hall, IBD clinical nurse specialist at Homerton University Hospital, discusses ‘What is IBD and what should I expect from diagnosis and investigations?’. Megan Houghton, IBD dietitian, King’s College Hospital, will look at the role of diet in IBD.

Saturday 13 October 2018 Dr Nora Thoua, consultant gastroenterologist at Homerton University Sunday 14 October 2018 Sunday 21 April 2019 Hospital, talks about Alex Hall Cath Stansfield, nurse consultant in Dr Jonathan Epstein, consultant pregnancy and fertility. Plus gastroenterology at the Salford Royal general and colorectal surgeon at ‘Living with IBD’ (speaker from Crohn’s NHS Foundation Trust, looks at Salford Royal NHS Foundation Trust, and Colitis UK TBC). practical tips on living with looks at surgery and IBD, while Sunday 18 November 2018 IBD, and Dr Claire Rehan, George Lipscomb, consultant Mr Janindra Warusavitarne, colorectal consultant clinical gastroenterologist and surgeon at St Mark’s Hospital, speaks psychologist at Royal physician at the Royal on surgery and IBD. Kay Greveson, Bolton Hospital, speaks Bolton Hospital, will about coping with IBD. IBD clinical nurse specialist at Royal address cancer and IBD. Free London NHS Foundation Trust, Dr Jonathan Sunday 2 December 2018 LONDON will look at ‘Travel and IBD’.

Epstein Dr Salil Singh, consultant The Wesley Euston Hotel and Conference Venue physician and gastroenterologist at BOOK ONLINE AT Royal Bolton Hospital, will answer the Sunday 1 July 2018 crohnsandcolitis.org.uk/PEP The sessions are: ‘Coping with IBD’ Places are limited. question: ‘What is IBD and what CONNECT • SUMMER 2018 • 13

NOTE BOOK

PROJECT LOOKS AT GROWING UP WITH IBD YOUNG PEOPLE WILL BE SURVEYED ON FRIENDSHIPS, ANXIETY AND MORE

H

ow IBD can affect young people’s chances of making or maintaining friendships is being investigated in an 18-month research project.

Being Me With IBD:

Growing Up And Getting On With My Life is led by Professor Bernie Carter of Edge Hill University.

Funded by Crohn’s and Colitis UK, the study will initially involve recruiting 120 young people aged between 14 and 25 with IBD

THERE’S BEEN VERY LITTLE WORK ABOUT WHAT IT’S LIKE TO LIVE WITH IBD WHEN YOU ARE YOUNG

to complete a survey on factors such as friendships, loneliness, anxiety, health and their sense of control over their lives.

Potential participants will be approached to complete the survey when they attend appointments in the next few months at Alder Hey (Liverpool), Royal Liverpool University Hospital and St Mark’s in London.

Researchers will then

10,000th VOLUNTEER JOINS STUDY

BIORESOURCE PROGRAMME AIMS FOR 25,000 PATIENT RECRUITS

T

he 10,000th patient has been recruited to The National Institute of Health Research (NIHR) Inflammatory Bowel Disease BioResource research programme.

Launched nationally in 2016, the IBD BioResource recruits patients with IBD to help researchers better understand Crohn’s Disease and

Ulcerative Colitis and IBD BioResource try to develop new project and consultant treatments. gastroenterologist at Those who have Cambridge University joined have indicated Hospitals, said: “Getting that they are willing to the 10,000 recruits to participate in mark is a fantastic research studies achievement and I and trials on the am very grateful. basis of their genetic Since its launch we make-up or clinical have been delighted features. by the level of Dr Miles enthusiasm Parkes, shown by national recruitment lead for sites and the NIHR patients Dr Miles Parkes: ‘clinical benefit’

14 • SUMMER 2018 • CONNECT

ask up to 40 of those surveyed to take part in interviews about their experience of living with IBD. Participants will be asked to draw a map of their friendships, and to take photographs about the positive aspects of friendship and the things about IBD that threaten these relationships.

“We know life can be

FOR MORE INFORMATION Visit ibdbioresource. nihr.ac.uk alike, and particularly by the scale of interest from scientific community.”

To be a part of the IBD BioResource, patients are asked to provide a small blood sample and clinical data for researchers to study.

They may then be invited to participate in research studies or trials.

Crohn’s and Colitis UK is contributing towards funding the BioResource.

RESEARCH UPDATES

A ROUND-UP OF SOME OF THE RECENT SCIENTIFIC WORK THAT HAS BEEN SUPPORTED

BY CROHN’S AND COLITIS UK

DRUG SIDE EFFECTS

What’s it like to be young and have IBD?

tough for adults with IBD but there’s been very little work about what it’s like to grow up and have to navigate and make social connections when you are young,” said Professor Carter.

After the data has been analysed and reported, the aim is to produce engaging resources that will help to support young people with IBD to navigate the challenges they face.

SHUTTERSTOCK

COULD YOU HELP? Prof Carter and her team at Edge Hill are keen to hear from people aged 14-25 with IBD who would like to join the study’s advisory panel.

The role involves giving feedback on survey findings and resources produced following the research to make sure they will meet the needs of a young audience.

A video explaining the role is available on YouTube – search for The Being Me With IBD Study.

FOR MORE INFORMATION If you’re interested in participating, email BeingmewithIBD@edgehill.ac.uk

S

cientists at the Royal Devon and Exeter NHS Foundation Trust have identified several genes that could determine whether someone has a bad reaction to a medication.

The project, led by Dr Tariq Ahmad, received a grant of £106,298.

The study identified a number of genetic markers that predispose patients with IBD to having serious side effects, such as pancreatitis or bone marrow suppression, when taking common

Genes can dictate reactions to a medicine

medications such as azathioprine and mercaptopurine.

The scientists hope their study will enable UK clinicians to take a simple blood sample from

patients prior to starting drug treatment, which could then influence a decision to avoid certain drugs, reduce the target dose or increase the monitoring for side effects.

FIGHTING FATIGUE Fatigue is a common symptom of IBD, with more than 40% of patients reporting it when in remission and 86% when their disease is active.

A pilot study has been investigating whether a multidisciplinary programme of psychological and educational support could help change the fatigue levels among those whose IBD was in remission.

The project was initially supervised by Professor John Hamlin – of the Leeds

Gastroenterology Institute (LGI), St James’s University Hospital – and It can help later by Prof to set goals Alexander Ford while a (also of LGI and control group received University of Leeds).

With a grant of £8,490, standard medical care.

The researchers found the study involved an that there was a positive intervention group who effect on the fatigue and were taught skills for energy levels of the managing fatigue such as intervention group, and relaxation practices, the believe that further recognition and management of relapse of research in the area would be very welcome. fatigue, and goal setting,

CONNECT • SUMMER 2018 • 15

ON THE FLIP SIDE WORDS SIAN PHILLIPS PHOTOGRAPHS MICHAEL POWELL

Solving the mental and physical riddles of parkour helps Olly Powell cope with his IBD

16 • SUMMER 2018 • CONNECT

MENTAL ENERGY

A

s this issue of Connect hits your doormat, 18-year-old Olly Powell will be slap bang in the middle of his A-level exams.

Speaking slightly ahead of that challenging time, Olly says he hopes his Ulcerative Colitis – currently nicely in remission – will not cause him trouble.

“I have found that naturally, with what it is, my Colitis does sort of come back when I’m in stressful situations so I’m optimistically looking forward to my A levels,” he says, laughing.

“But I keep going and hopefully won’t get any flare-ups. I am feeling very comfortable right now. I forget sometimes that I’ve got something Olly is back to full fitness after injuring an ankle

wrong with me.” As most people with IBD know, this is a great place to be.

Olly says his sense of wellbeing comes from eating a healthy vegetarian diet, and his love of parkour – which involves acrobatics such as flips, jumps, twists and turns while moving through, around and over obstacles such as walls or playground equipment.

“Parkour is my way of escaping everything,” he says. “And I have never had to go into hospital for a flare-up. I am very fortunate in that sense.”

It was a different picture two years ago as he sat his GCSEs. “About a month or two before my exams, my grandmother passed away and it was a weird few months …

I had quite a few flare-ups then.”

Olly was also just getting used to life with Ulcerative Colitis at that point, having recently received his diagnosis. For a year or two before his GCSEs he’d been back and forth to the doctors. “I was getting a lot of cramps and pains, and it took a lot of the energy out of me – and there were symptoms like blood in the stools and stuff like that,” he says. “I got diagnosed through an endoscopy.”

He says he found his diagnosis helpful as he could understand what he was dealing with – although it wasn’t always easy. “I remember being on Movicol for a while, to soften the stools, which was foul. The dosage I had varied on how I was doing and sometimes at school if I was on a stronger dosage of it, I might have been a bit panicky about it,” he says.

Although currently on Asacol (an anti-inflammatory), Olly has stronger medication and, if needed, can have enemas should his condition worsen.

“Everything is under control for now, and I know that if there is a flare-up I have stages I can go to that help me keep that under control as well.”

I SOMETIMES FORGET THAT I’VE GOT IBD CONNECT • SUMMER 2018 • 17

MENTAL ENERGY Although mature beyond his years, Olly admits that having a good mental attitude is something he has had to learn. “Everyone has those moments and thoughts where even if it’s the slightest flare-up you think, ‘I don’t really want to be dealing with this around his village but also travels to again right now.’ It puts your mood nearby Lincoln to meet others who down without you realising it.” have the parkour bug.

He says his mates have noticed Despite injuring his ankle last year, when this dark cloud descends. “I have he’s back on his feet and can do back, had my friends from school notice a front, side and wall flips. “I taught personality change in me,” he adds.

“But I’ve got much better at controlling myself to do a cork before I did my ankle in, which was quite good fun. that recently. I’ve learned that UC is It’s kind of like a back flip but you go something I am going to have, it’s off of one leg and then sort of go something I’ve got and I just take each horizontal in the air and then do a 360 day as it comes. If I have a flare-up I spin in the air, while doing a flip.” feel better about it these days because For Olly, the appeal is the challenge. it’s just a reminder that I need to keep “There’s nothing better than on top of everything and stay in being able to do something,” the position I am.”

LIVING he says. “It’s not just getting As well as carefully WITH IBD from one place to another, monitoring what he eats, Looking for some it’s not just getting over Olly is able to use his great tips? See physical obstacles, it’s exercise regime as a way crohnsandcolitis. getting over mental ones of destressing. org.uk/ because a lot of the time it’s “When I first got into livingwithibd your head that stops what parkour I spent three years your body can do. Which I sort of or so watching videos online proved to myself when I found and teaching myself how to do stuff in parkour, when I did the back flip. It my garden and in the park in my village [in the Lincolnshire Wolds] … I looks bonkers and you don’t think you’ll ever be able to do it and the one thought I’d like to teach myself a back flip. So I went to the park, spent weeks thing that’s stopping you is your head.”

He attributes parkour to helping trying to figure out how to do it, to get him cope with his condition. “I myself ready mentally,” he says. genuinely think parkour is the main Eventually he succeeded and that was thing that’s helped me be in such a it, he was hooked. “I fell in love with positive position about my Colitis. You everything to do with parkour.” can’t sit and mope all day – especially Now, partly thanks to passing his about my Colitis, which flares far more driving test, he’s not just leaping

PARKOUR HELPED ME BE POSITIVE ABOUT MY COLITIS

Managing stress through parkour helps Olly to feel upbeat

18 • SUMMER 2018 • CONNECT

with stress. If you sit down and stress all day you are just going to make yourself stressed and what do you expect other than more symptoms? So you go out, enjoy yourself, prove to yourself you can be normal and enjoy life, and do what you can.”

Olly says he feels blessed to have such a strong support network. His family – mother Sarah, father Michael and sister Caitlin – have been “unbelievably great”. Although he could have moved to a hospital closer to home, his parents are still happy to accompany him to see specialists at Queen’s Medical Centre in Nottingham – and they help him keep his feet firmly on the ground.

His friends reacted with typical teenage jocularity at first, joking about “the Robocop instrument” that did his endoscopy. “But I think the more I live with it,” says Olly, “they have got used to it and realised what it sort of means to me. So they have become a lot more supportive in the sense that if I am feeling a bit low and I say, ‘It’s down to my Colitis,’ they’ll say, ‘Well, if you need anything, let me know.’”

He says he doesn’t shy away from

HOW TO TACKLE STRESS We all have to deal with a certain amount of stress in our lives but exams, upcoming events and life changes can all make it worse.

Here are some tips for decreasing the amount of stress in your life:

Olly has been inspired by hearing how others living with IBD cope with their condition

I PREFER TO FEEL LIKE I’M WINNING. POSITIVITY IS KEY explaining his illness to those who ask.

“I explain what it is and that I’ve got it and there’s not much I can do other than deal with it. I try my best to show it is something you’re stuck with but in a way that doesn’t lead to people feeling sorry for me. I prefer feeling like I’m winning. Positivity is key.”

Once his A levels are out of the way, Olly aims to study psychology at Lincoln University, with the end goal of becoming a mental health counsellor. He says he chose this route after watching a close friend being diagnosed with depression. “He was always the mad, crazy kid, the source of laughter … the nicest guy I have ever met and probably ever will meet, and he just completely flipped. He became the polar opposite and it was weird adjusting. I have been trying my best to help him as much as I can because obviously people like me and

his other friends – we can only ever do so much. But he’s improving, which is really nice to see. But that kind of inspired me to try to get out there and try to do my part for people with mental health issues.”

Olly says his own health journey has made him more self-aware too.

“I’ve had times that I’ve thought it’s a possibility my condition could get worse. But I don’t want to spend my life worrying about something that could happen when it might not.”

A Crohn’s and Colitis UK member and supporter (he raised around £200 for the charity by running the Lincoln 10K last year), Olly says hearing about other people’s health journeys helps.

“I’ve read about people where [their IBD] has progressed a lot more and they’ve had surgery, and there are a lot of stories of people coming out 10 times stronger. It’s beautiful to read.

People are doing amazingly and they show so much courage.

“I think those stories need to be told – it lowers the worry level. If it does happen to me, which hopefully it won’t, then I know these people have managed it, and why can’t I?”

l Learn to say no without feeling guilty l Build in some time to relax every day – deep breathing, a bath, yoga or simply listening to music can help l Find an exercise you enjoy and schedule it into your week l Talk to a friend, a family member or someone you trust l Write a journal or find likeminded people on well-established online forums to chat with l Take breaks such as days out, short holidays or even just an hour away from the demands of your day l Speak to your GP or health professional if you feel things are getting on top of you l Make sure you get enough sleep l Avoid too much caffeine in your diet

BIG IDEAS

WORDS FIONA McKINLAY PHOTOGRAPHS VARIOUS

CREATIVE FLARES An artist, a musician and a theatre maker share how IBD has affected and influenced their work

20 • SUMMER 2018 • CONNECT

MURRAY MACLEOD Musician Anthemic guitar pop trio The Xcerts have spent the majority of 2018 on tour, playing to some of their biggest crowds yet across the UK and Europe thanks to the success of their latest album Hold On To Your Heart.

Frontman Murray Macleod has Crohn’s Disease and although he has well-managed symptoms most of the time, it can catch him off guard.

“I spent about three years not taking medication because I felt fine and was able to live without it. And then in 2014, when we were making our third album, things got quite stressful and I had a terrible flare-up.

I went back on the medication and have been on it ever since.”

As a touring musician he has found maintaining a diet that works for him, and staying on top of his medication, to be essential.

“It’s good that veganism is common now, so pretty much every city we go to has a great selection of vegan restaurants – so I can eat clean if I want to. But last year we were on tour in Europe and I forgot to take

Murray Macleod says that managing his condition well is an act of defiance

my medication. I thought I’d be fine but ended up having a terrible episode in Frankfurt. There were people smoking and the secondhand smoke was really punishing my Crohn’s. I had to get my flatmate in Brighton to send medication to Paris. When we got there it still hadn’t arrived. Then we left Paris and I got back to Brighton and didn’t have any medication because he’d sent it all.”

When Murray was diagnosed at the age of 16 he was “terrified”.

“I just thought, OK I have a really serious illness. I’m going to die.”

After he got out of hospital, Murray was watching music channel MTV2 when he came across some unexpected peace of mind.

“I was so weak I could barely pick up the remote control. A Glassjaw video came on – I’d never heard of them. A banner along the bottom of the screen had facts about the band, and it came up saying that Daryl Palumbo, the lead singer, just had to

Life–affirming moments: The Xcerts

cancel a tour because of Crohn’s Disease. I learned a lot about Crohn’s after that from reading interviews with Glassjaw. It made me realise my life isn’t going to stop.”

Murray had been a sporty teenager, but anaemia from his IBD made it difficult for him to play as much as he had before – and, he says, “I bruise like a peach”. Instead of football, music became a refuge. He’d head to the practice room with his friends to write and play songs, some of which formed the basis of The Xcerts’ debut LP. “I sang a lot about Crohn’s on the first album, and the confusion of it all.

Listen Don’t Panic – that song is all about me and being diagnosed with Crohn’s Disease. I was an excitable and frantic kid anyway, so I went straight into panic mode. My parents and doctors would say, ‘Listen, don’t panic.’

“Sixteen is a confusing age anyway, but when you throw an illness into the mix it made for a really heavy time.”

Now he rarely worries about his IBD – as long as he eats well and packs his medication. Managing his condition has become an act of defiance.

“Everything the band has achieved – all the life-affirming moments that have come with this new album – are like a big ‘f*** you’ to Crohn’s.”

IT MADE ME REALISE THAT MY LIFE ISN’T GOING TO STOP CONNECT • SUMMER 2018 • 21 17

BIG IDEAS

Liz Richardson had just left acting theatre maker Tara Robinson she school when she was diagnosed started writing Gutted. Described with Ulcerative Colitis. as “a shameless tale of love, “The start of my Colitis was laughter and loos”, the production quite dramatic,” she says. “I kept charts Liz’s experiences with UC. going into hospital and I’d be there It enjoyed a sold-out run in for two weeks at a time.

Manchester and critical acclaim at “I thought I’d come out of the Edinburgh Fringe in 2017, acting school and be an actor, and has toured UK hospitals. have an agent, and go to “Reliving a lot of the memories auditions. I got an agent but allowed me to go: ‘Oh, that’s why I lost them because I kept that happened, and that’s why I felt being ill. I always felt like that at that point.’ I feel I was battling a privileged to use my art little with my to kind of counsel my image too, way through it.” because I Liz is working was on on a new idea so many – unrelated to IBD steroids and – with HOME strong drugs Theatre in that my hair Manchester, where Major bowel thinned, my face she is a supported surgery was life changing was very swollen artist. “UC has taken me and I had a lot of fluid down a path I never weight around my lower back imagined, as a theatre maker rather and tummy.” than a jobbing actress,” she says. “I She got some work, but take power over my own career and fatigue and flare-ups proved a I’m not worrying about an agent or real strain on fulfilling her letting people down if I have fatigue. acting ambitions.

I’m really happy with my life.”

In 2011, Liz had surgery to Gutted is touring England remove her entire colon and and Wales this autumn. See rectum, and to create a j-pouch. She theconkergroup.co.uk/gutted says it changed her life.

“Then I decided I needed to regain all that I’d lost … So I started writing about my experiences in stand-up comedy form.”

She put together a stand-up routine and did quite well with it, but Liz was keen to develop a more theatrical piece. So together with

MY IBD HAS TAKEN ME DOWN A PATH I NEVER IMAGINED

Writing about IBD is a privilege, says Liz

22 • SUMMER 2018 • CONNECT

ROBERTO RICCIUTI / GETTY IMAGES

LIZ RICHARDSON Theatre maker

Two of the artist’s 365 selfies

I SET UP A MIRROR ON MY DESK AND BEGAN DRAWING

Hannah in her studio at home

HANNAH THOMAS Artist Hannah Thomas always loved to be creative, but when Crohn’s Disease affected her ability to work in a conventional environment it became an even more central part of her life.

“I went through a five-year period of testing with no diagnosis,” she says. “Throughout those years I think a lot of damage was done. I lost a considerable amount of my bowel, which has affected my ability to absorb nutrients. I’ve struggled with active disease for years and have gone on to have several surgeries.”

Working from home, Hannah

produced greeting cards and commissions, and studied psychology and art to inform her skills. Life drawing became her passion.

“Drawing from life forces you to really look, and look again, to see what’s there before your eyes,” she says.

Because of her Crohn’s, Hannah developed a tendency to work quickly: “I’m unable to spend a lot of time on any one thing because I’m always in and out of the toilet. Or I might

start something and be inspired, only to find the next day I’m too unwell to work on it. My best work is done in a short period of time.”

A couple of years ago Hannah felt so ill her world shrunk to just a few usable hours a day. The Crohn’s was unrelenting, alongside anaemia, and muscle and joint problems.

“I yearned for a sense of fulfilment and purpose: a chance to give meaning to my days,” she says.

“I set myself a project – to produce a ‘selfie’ a day for one year.

With a limit of one hour, I kept the work to the size of a postcard. I set up a mirror and began drawing. I didn’t realise how challenging it would be so I began journaling on the back of the selfies, recording my physical and emotional journey through the illness.

“This really gave me a sense of achievement, freedom of expression within my isolation and a fantastic body of work, not only in images but also in thoughts and words.”

Unbeknown to Hannah at the time, the project was a therapeutic tool that guided her through the illness into new treatment, which for now has opened up her life again.

CONNECT • SUMMER 2018 • 23

KEEP THE

FAITH After being fitted for intravenous nutrition, Ramadan became a different challenge for Omar Malick

S

WORDS FIONA McKINLAY PHOTOGRAPHS ALASTAIR LEVY

awm – it’s one of the Five Pillars of Islam.

It means fasting from dawn to dusk during Ramadan, the ninth month in the Islamic calendar. Ramadan follows the lunar cycle, meaning that there’s a shift in when it falls each year. When it lands in summer, the fasting period in the UK can reach around 18 hours a day.

This year, Ramadan started on 16 May – and finishes on 14 June.

For Muslims, observing Ramadan while living with IBD brings extra challenges.

For some, such as 33-year-old Omar Malick, fasting is not an option. Although Islam allows for someone to break the fast if they are severely ill and will become worse due to fasting, this can carry with it complicated feelings – guilt, worry that other people might judge you, an 24 • SUMMER 2018 • CONNECT

increased pressure to do more to mark Ramadan in other ways.

Omar was diagnosed with Crohn’s Disease when he was 16, and managed to fast a few times in the early years.

His experience of IBD, though, has been severe. He’s had two resections and feeding tubes, and in 2012 had his first Hickman line inserted for intravenous nutrition.

He had been taking part in a medical trial which he politely says “didn’t go well”. His weight dropped to around 44kg – not a lot for a man of 6ft2in – and his symptoms became more severe. His consultant made the decision to take him off the trial and he spent five weeks in hospital, eventually leaving with the Hickman line. Alongside other adaptations to his lifestyle, fasting for Ramadan became incompatible with Omar’s health.

“The past few years it’s been difficult,” Omar says. “Obviously you can’t take anything orally or

Etra paribus halis, quam, Omar has been living with Castrarbis, stussim his Crohn’s Disease meremenfor trimur peconsit diagnosis 17 years

REAL LIVES

TO KNOW THAT I’VE GOT THE MEDICAL STAFF ON MY SIDE IS REASSURING nutritionally or anything, and that extends to intravenously as well. At the moment, Ramadan’s in summer so it’s quite long and you’re looking at 17, 18 hours a day. The machine’s running 11 hours. It just won’t add up.

“I’ve had a health practitioner offer to write a letter to an imam or a religious leader to explain. Thankfully it’s never gone that far, but to know that I’ve got the medical staff on my side is always reassuring.

“The fasting is compulsory if you are able to. So if for medical reasons you can’t, if you’re taking medication, there is a degree of flexibility there.

You can pay for the meals of someone who is fasting but can’t afford to feed themselves twice a day. The proper term for this is Fidyah. We’ve been doing this for a few years.”

It’s difficult, however, to fully accept the doctors’ advice.

“I’ve been a little bit naughty and have kept a few fasts, just on my nights off if I can manage. And it hasn’t been terrible, which sort of makes you feel worse – if I’ve managed it once, I can do it again.

But it’s probably not a good idea,” he reflects.

The bigger challenge, Omar says, is the feeling of exclusion.

“Your friends, your family, they’re all taking part in this one-month

CONNECT • SUMMER 2018 • 25

REAL LIVES

WHEN YOU SEE THE STITCHES AND SCARS, YOU REALISE IT’S NOT ALL GREAT event and you’re sort of looking at it like an outsider. They’ll be talking about, oh, it’s been difficult this year, or how it’s going while there’s a heatwave on and how they’re all hungry and thirsty. You can’t relate to any of that, and they’re going through it, and you feel a little bit guilty for eating even though it’s completely out of your hands.”

Omar tries to be discreet when eating or drinking in public during Ramadan, as he realises it would be difficult for someone to understand on first sight why he is breaking fast.

“I’ve been lucky, no one’s really said anything to me,” he says, “but you get that feeling that you might be judged.

People come to their own assumptions – he’s not fasting, he’s not doing this, he’s not doing that, he must be

EXPERT ADVICE Dr Barney Hawthorne offers some tips on fasting with IBD Is it safe for me to fast?

Yes, for the vast majority of patients with Crohn’s and Ulcerative Colitis.

Some exceptions are: l if there are high fluid losses – either because you have an ileostomy that gives a high-volume output (more than 1.5

26 • SUMMER 2018 • CONNECT

Omar is fed intravenously by his Hickman line six nights a week

ashamed. People don’t automatically jump to the assumption that, oh, he must be unwell.

“On first glance, I look pretty normal and it’s not until you see the scars, the stitches, the line dangling, that you realise it’s not all great. If

litres per 24 hours), or because of high losses from a fistula (a connection from the bowel to the abdominal wall) that has similar high output, or severe diarrhoea l if there is severe malnutrition, or inability to eat a large meal in a short time l if there is very active disease resulting in severe pain, fever, fatigue, vomiting or diarrhoea l if there is a need to take

someone ever does approach me, asking why are you eating or why are you doing this, I’m happy to explain why. I’m not ashamed or embarrassed by it.”

Omar is connected to his intravenous nutrition six nights a week. On his ‘day off’, he is encouraged

medication by mouth during the day. With drugs taken once or twice a day it may be possible to take them before sunrise or after sunset. If in doubt, consult your doctor.

Will fasting put my IBD into remission?

There is no evidence that fasting improves inflammation in IBD. This ‘myth’ may have arisen as sometimes symptoms related to eating – for example, abdominal pain or diarrhoea – improve on

stopping eating. The result is malnutrition, weight loss and the disease will still be there but the ability to recover will be impaired.

There may be some indirect benefit from religious observance, and fellowship with other Muslims may have psychological benefits (the same applies for other faith groups), and this in turn has been shown to improve disease activity. Of course, if the fasting causes physical deterioration this outweighs these indirect benefits.

to eat and drink – hydration is especially important to make sure he doesn’t undo good progress in his health. There are other ways to respect the sacred month, however, and Omar does what he can.

“Fasting is only one facet of Ramadan. Other ways to feel involved include praying, going to mosque, reading the Quran and generally taking the month to reflect and improve oneself. Aside from food you can refrain from other things, like gossiping, smoking, drinking etc. If you’re up for it, there are always charity projects you can help with – check with your local mosque to find out what’s happening.”

Some longer prayers at the mosque take place at night and, Omar says, attract a good turnout. By this time of day, though, Omar will be connected to his intravenous nutrition, and that makes this a potentially difficult situation for him.

“I avoid going out with my feed and pump – it’s in a rucksack, and to be around so many other people is a risk – it could get caught or, worst case, be mistaken for something else. Having to explain to a congregation why I can’t take off the rucksack with essentially wires coming out of it is not something I’d like to do.”

There is a tradition at the end of Ramadan that older relatives give money to the younger ones. For Omar, this is another awkward situation. He says: “You’re taking money from your grandparents, your parents, and thinking, well, I don’t really deserve this. I haven’t done anything this month to warrant this reward. They’ll say, ‘You still took part, you did this, you went to the mosque …’ but you don’t feel you deserve it.”

At the end of Ramadan, Eid is celebrated – and some of the weight will be lifted from Omar’s shoulders as sawm comes to an end. Living

YOU GET THAT FEELING THAT YOU MIGHT BE JUDGED

OMAR’S TIPS FOR FASTING WITH IBD 1

4

KNOW YOUR BODY No one knows your body better than yourself. If you truly feel like you can fast – maybe your IBD isn’t severe or you’re in remission – then try, but don’t feel bad or guilty if it’s not happening.

DON’T LET IT BREAK YOU If you have to break a fast for health reasons, don’t be disheartened. I’ve been told that if you break for reasons outside your control it still counts because the intent was there.

2

5

EAT WELL AT NIGHT It’s a challenge to ensure that when you do get to open the fast it adequately provides the nutrients you’ve missed out on during the day.

Those of with us with IBD often don’t have the same reserves as other people, so we can very quickly go from just managing to really struggling.

FIND OTHER WAYS TO BE INVOLVED Praying, going to mosque, reading the Quran, taking the month to reflect and improve oneself, and doing charitable work are all other ways to feel involved in Ramadan if you are unable to fast.

3

Fried food such as samosas can be a ‘huge temptation’

BUT GO EASY ON THE SAMOSAS And, importantly, we’re all guilty of overindulging when it comes to breaking the fast. Sweets and fried food can often be a huge temptation, but because of the IBD we need to be careful. Go easy on the sugars and the samosas, or you will struggle later in the evening or the next day.

with IBD and a Hickman line will carry on year round and that alone isn’t an easy journey.

“It’s taken away spontaneous behaviour – if I want to go on holiday, I have to let the healthcare providers know six weeks in advance so they can prescribe me medication to take with me, and I’ve got all the letters, have to let the airline know, let the insurance company know. It’s a lot of organisation. There’s a risk of infection too. It’s been a big adaptation.

“At the moment, though, my weight is healthy – and it’s pretty much all down to the feed. If I’m not

feeling like food, or I’m having a bad flare, I don’t have to stress as much because I know I’ll be getting between 1,600 and 2,400 calories overnight.

“The Crohn’s itself is still active, and all the typical side effects from the trips to the loo to the flaring still happen on an almost daily basis. But saying that, I’ve recently started on a new course of ustekinumab. It’s early days, but fingers crossed it can help relieve some of the symptoms.”

CONNECT • SUMMER 2018 • 27

YOUR VOICE OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

WHERE THERE IS A WILL …

Gillian decided to leave a legacy for Crohn’s and Colitis UK after attending WALK IT

I

t was as a volunteer that Gillian, 70, attended the London WALK IT in 2016.

That was when she decided to put Crohn’s and Colitis UK in her will.

Some “young lads” were brought up on stage at the event to be interviewed about why they’d chosen to take part. “They were probably only about eight or nine – and this chap had brought along all his friends to do the walk.

“It made me think also how amazing these children are because I know a lot of younger children are getting diagnosed now. To cope is difficult enough as an adult – what on earth it must be like coping as a child or a young person? I can’t imagine.”

Gillian thought of all the young people raising money through WALK IT and other activities, and those affected

by IBD now and in the future.

“There was a young lady in her 20s who had done a

sponsored cross-channel swim and I just thought if someone is prepared to do all that …

And I also thought about the youngsters for whom it’s so important to find a cure or better treatment.

“I felt, ‘At least I can leave some money in my will to help the research that’s ongoing.’

I’ve always been amazed at what a lot of money Crohn’s and Colitis UK gives to research projects, and that is the only way a cure or treatments are going to be found.”

“I don’t have a great deal of money, but I think it’s important. If everyone gave a little, that’s what builds up.”

Gillian’s legacy gift to the charity will also be something of a thank you for support she has received.

She was diagnosed with Crohn’s Disease aged 50, having experienced symptoms for around 20 years prior to that without the right

IF EVERYONE GAVE A LITTLE, THAT’S WHAT BUILDS UP 28 • SUMMER 2018 • CONNECT

conclusion being reached. At one point, doctors thought she had ME (myalgic encephalomyelitis) due to the fatigue she was experiencing. A leaflet she picked up at the doctor’s surgery, though, flagged up the possibility of IBD being the cause. The leaflet also led her to the charity’s Local Network.

“Crohn’s and Colitis UK also helped me when I was applying for Disability Living Allowance. They produce an informative guide about applying and have an amazing helpline – which I’ve used more recently to find out about things. The support is so important. They say knowledge is power and once you understand a bit more about the illness it helps you cope with it.”

Gillian’s Crohn’s has been in remission for 10 years and she is currently not taking any medication. She does,

however, suffer from joint inflammation, which can be a common symptom, even in periods of remission.

By leaving a gift in her will, Gillian will help support research and the continuation of services such as the Crohn’s and Colitis UK information line.

“It’s not just about the good feeling,” she says. “It’s about knowing your money is going to something worthwhile.”

FIND OUT MORE ABOUT LEGACY GIVING remember@crohnsandcolitis.org.uk or 01727 734485

KIT TRIBUTE

Football team sponsored in memory of local man

N

Leaving a gift in your will can fund research into treatments for IBD

ew strips and training jackets bearing the Crohn’s and Colitis UK logo have been bought for a football team in Essex in tribute to local man Nick Coppin, who died of colon cancer 19 years ago, aged 34.

“Despite being diagnosed with Ulcerative Colitis when he was 19, Nick was a very active person who loved his sports,” explains his sister, Helen Newman.

“After our annual quiz night last year – organised by his friends Andy and Stuart – it felt fitting to use the £350 raised to sponsor my son’s football team, the Reed Hall Sentinels under-18s.”

£12K RAISED IN RIKUL’S MEMORY

A £500 donation from the North Essex Crohn’s and Colitis UK Network – where Helen is a volunteer – also went towards the kit, which Helen says has helped spread awareness and understanding of IBD. “After the first match in the new kit, the manager of the opposing team said it was lovely to see because his father had IBD,” adds Helen. “It’s great to see the kit inspiring others to ask questions about the work of Crohn’s and Colitis UK and IBD, which is something I’m sure my brother would have been proud of.”

Nick’s family and friends have raised more than £15,000 for the charity since his passing.

Rikul Patel became a doctor despite flare-ups and surgeries during training

Donations honour doctor who lived with Crohn’s A JustGiving page set up in memory of Rikul Patel by his wife Sonia has received more than 200 donations, totalling upwards of £12,000.

Rikul was diagnosed at the age of seven and spent much of his life in and out of hospital.

He qualified as a doctor at the age of 25, despite flare-ups and surgeries during his training. Rikul

and Sonia got married in August 2015.

“I loved him in every way possible (including his stoma) and together we always found the silver lining in each adversity,” says Sonia.

“He was my pillar of strength and his life will be a constant reminder that we must carry on and live to fight another day.”

Although it wasn’t Crohn’s Disease that took Rikul’s life, raising awareness and support for those living with IBD was a goal he strived for, and Sonia is continuing

this in his memory at justgiving.com/rikul-patel TO REMEMBER SOMEONE SPECIAL Visit crohnsandcolitis.org.uk/ remember to set up a tribute page

CONNECT • SUMMER 2018 • 29

YOUR VOICE

OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

WORTH THE WEIGHT

Manny in February 2017 and, above, in January this year

A lifestyle change helped Manny Tura power himself to new heights

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anny Tura, 27, from Leeds, has broken a deadlift record in the Yorkshire northeast regional powerlifting competition, which qualified him to compete at a national level in September – an accolade he never could have imagined 18 months ago.

Diagnosed with Crohn’s Disease in 2001, Manny had been adept at managing his IBD in his everyday life, but then his bowel perforated on Christmas Day in 2016.

“Everything went downhill – I had one foot of my inflamed intestine removed and was fitted with an ileostomy bag. After this I thought I’d be able to focus on

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getting well but was hospitalised again in February 2017 when my weight dropped to 5st 2lb,” explains Manny.

Manny was in hospital for six weeks and surgeons told him he would be unable to have ileostomy-reversal surgery until he put on at least three stone. That fuelled his fire to improve his condition.

“I started reading about food, nutrients and how the stomach and gut work as I wanted to be fitter, healthier and stronger than I had been

prior to being so ill,” says Manny. “I ate five to six meals a day while being fed intravenously and set daily goals of walking further from my hospital bed to build up my strength.”

However, after a major issue with his stoma in May 2017, surgeons decided reversing his ileostomy was Manny’s best option.

He says: “Once I had healed, I started going to the gym five days a week and cut out fried food, sweets

I’M ECSTATIC WITH HOW FAR I’VE PROGRESSED

and fizzy drinks in favour of healthy foods such as fish, chicken and eggs.

Eating healthily and maintaining an active lifestyle has really improved my IBD.” “Never let IBD define you; you define IBD,” he adds. “The support I’ve received has been overwhelming and I’m ecstatic with how far I’ve progressed seven months after surgery.”

Read more about Manny’s experience of IBD at allmyfriendsareeggs.com

‘OUR CHARITY OF 2018’ Alexandra Hackwell shares why she nominated Crohn’s and Colitis UK

S

eeing how Crohn’s Disease affects her best friend Taryn’s life, 28-year-old Alexandra Hackwell persuaded her workplace to make Crohn’s and Colitis UK its 2018 charity of the year.

“Over the past year Taryn has From a been placed on a ‘dress as a liquid diet and director’ day undergone many (directors operations, Alexandra and Taryn wear black including having part trousers and a of her intestine blue shirt) to a royal removed, to help manage her wedding-themed tea party, condition,” says Alexandra, a the colleagues have held a procurement manager at number of inventive activities, Kent-based MHS Group. putting them well on their way “I nominated Crohn’s and to achieve their fundraising Colitis UK to raise awareness target of £25,000. of IBD and to show how it “We’ve raised £2,000 so far affects all aspects of your life, and hope to raise more via as well as your physical and mental health. People assume WALK IT, an I’m a Celebrity-style competition and our Christmas that it’s just an illness that party,” says Alexandra. affects your bowels but it’s so “Everyone at work has been much more than this.”

How to support someone with IBD Emily Goldsmith, 20, has been a huge help to her friend Reece Collins since the 25-year-old was diagnosed with Crohn’s.

These are her top tips for supporting a pal with IBD:

1

really supportive. A lot of people have told me that they have or know someone living with Crohn’s or Colitis, so our fundraising has opened up the conversation around IBD.” For those thinking of making Crohn’s and Colitis UK their charity of the year, Alexandra says “just to go for it”.

“Crohn’s and Colitis UK has been really supportive throughout,” she adds. “It’s been a lot of fun to raise money for and awareness of IBD.” Contact partnerships@ crohnsandcolitis.org.uk to support Crohn’s and Colitis UK through your workplace.

SILENCE IS GOLDEN How keeping quiet at work helped Carole Roberts raise £1,300 “My week-long sponsored silence began as a bit of a joke,” laughs Carole Roberts.

“I’m known to be a bit of a chatterbox – my colleagues didn’t think I could do it.”

The Crohn’s and Colitis UK information officer carried out her sponsored silence at work in January, and found it to be a real eye-opener.

FOREVER FRIENDS

“I wasn’t prepared to feel so frustrated and isolated, but everyone got behind me,” says Carole. “My original aim was £300, so raising £1,296 has been incredible. I’d encourage everyone to put their fundraising ideas, no matter how silly they think they are, into action.”

KNOWLEDGE IS POWER Share what you’ve learned with your loved ones because, like you, each day they’re learning more about IBD.

2

ASK QUESTIONS Learning from the experience of others is a great way to bolster your knowledge.

3

GET INVOLVED I volunteer for the Leicestershire and Rutland Local Network.

Getting involved with your local IBD community is a great way to learn more and make friends.

4

TALK IT OUT This is really important when Reece has had a challenging day or just wants to have a laugh to take his mind off things.

5

BE YOURSELF Be loving, honest and caring. Just being by your loved one’s side is a calming influence.

Emily (left) and Reece

YOUR VOICE

OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

READ ALL ABOUT IT

TRY THESE NEW-EDITION PUBLICATIONS TO HELP MAKE LIFE WITH IBD EASIER NEW: SUPPORTING SOMEONE WITH IBD: A GUIDE FOR FRIENDS AND FAMILY Finding out that someone you care about has Crohn’s Disease or Ulcerative Colitis is a shock. You might be feeling anxious about what comes next and how their life will be affected. This information sheet discusses the valuable things you can do to help someone living with these conditions, while making sure you’re looking after yourself.

NEW: GOLIMUMAB This new drug treatment sheet provides helpful information about the biologic anti-TNF drug golimumab for the treatment of Ulcerative Colitis.

NEW: USTEKINUMAB You can find helpful information about the biologic drug ustekinumab for the treatment of Crohn’s Disease in this new drug treatment sheet.

CLAIMING PERSONAL INDEPENDENCE PAYMENTS (PIP) A guide to help people aged 16 to 64 with Crohn’s or Colitis apply for Personal Independence Payment (PIP). It explains who can qualify for PIP and how the application process works, as well as how to increase your chance of a successful claim.

CLAIMING DLA CHILDREN UNDER 16 A guide to claiming Disability Living Allowance (DLA) if your child has Crohn’s or Colitis. The guide takes you step by step through the whole process of making a claim for DLA.

TALKING TO MY CHILD ABOUT MY IBD As a parent with Crohn’s or Colitis, you may be concerned about whether to talk to your child about your illness, and what they should know. This information sheet looks at ways to talk to children of various ages about your condition.

FOR MORE INFORMATION crohnsandcolitis.org.uk/ publications

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Hannah Daragon celebrates her award

AT THE TOP OF HER GAME

From bowel resection to award-winning company

F

ormer teacher Hannah Daragon has won an eBay inspiration award for her firm, Hannah’s Games, which she set up while recovering from a bowel resection.

Hannah, who was diagnosed with Crohn’s Disease in 2005, started the online business in 2010.

“The company was like a rehabilitation tool,” Hannah says. “I used to rock up to my friends’ hen parties with my games, so I had a go at selling them on eBay and it gave me a real sense of validation.”

Hannah was thrilled to become a mother in 2016, despite fears that the surgeries she had undergone for Crohn’s Disease would make a pregnancy unlikely.

She then gave up teaching to concentrate on her family

and the business, which sells 500-1,000 games per week.

She was delighted with her accolade at eBay’s National Business Awards 2017. “eBay has been a main player in my life with IBD, so I entered the competition not expecting much – and I won,” laughs Hannah.

“I got £1,000 and an allexpenses-paid trip to eBay’s London HQ, where I gave a speech and met the company’s vice-president.”

She adds: “Running a business means if I’m having a flare-up I can manage it around my life. I lead my life now and have the power to choose how I roll with the punches – Hannah’s Games taught me that.”

FOR MORE INFORMATION hannahsgames.co.uk

I NOW HAVE THE POWER TO CHOOSE HOW I ROLL

JUST ASK

DR CHRISTIAN SELINGER Clinical lead for gastroenterology at St James University Hospital, Leeds

THE EXPERTS ANSWER YOUR QUESTIONS DOUBLE TROUBLE

Q

Is it possible to have both Crohn’s Disease and Ulcerative Colitis at the same time?

PROF PROBERT SAYS

No. There are no recorded cases of people having both.

There are patients in whom the diagnosis of Ulcerative Colitis appears to change to Crohn’s Colitis, which is Crohn’s Disease of the colon: such switches are not rare, but reflect the interpretation of clinical data and the difficulty that may arise when trying to distinguish between these two conditions.

It is worth remembering that Ulcerative Colitis does not involve the small intestine (except for rare cases of backwash ileitis), so once the

small intestine is involved the diagnosis of Crohn’s should be easy to make.

SEEING RED

Q

Why are people with IBD not allowed to give blood?

PROF PROBERT SAYS

There is a general reluctance to accept donations from people with any disorder in case it might be passed on to the recipient – even when this seems very unlikely. More significantly, perhaps, is the risk of passing on medication with the blood: the recipient might have side effects from the medication that they are unaware of consuming.

A final consideration is anaemia. Anaemia is common in IBD, especially iron-deficiency anaemia,

and giving blood will exacerbate this.

BABY STEPS

Q

Would IBD drugs have any effect on IVF?

DR SELINGER SAYS

Some women with IBD can struggle to get pregnant.

Becoming pregnant is much more likely when IBD is well controlled, both when trying to conceive naturally and when undergoing IVF. It is therefore a good idea to see your IBD team for a check-up prior to trying for a pregnancy.

For pregnancy, a balance between the risk of an IBD flare that can have bad effects on the unborn baby and the risk of any drugs used in IBD needs to be struck. With the exception of methotrexate,

PROFESSOR CHRIS PROBERT Professor of gastroenterology at the University of Liverpool

the benefits of IBD drugs usually outweigh the risks by far. Your IBD team can advise you on your individual circumstances.

When undergoing IVF, it is important to stay well to increase the chance of it being successful. In theory, some of the IBD drugs (azathioprine, for example) can reduce the chance of IVF working, but more active IBD will have the same effect. It is therefore generally advisable to not change IBD medication for IVF. It is, however, a good idea to discuss this with your IBD team prior to starting IVF.

INSIDE STORY

Q

Could worm therapy help treat my IBD?

SHUTTERSTOCK

PROF PROBERT SAYS

Discuss treatment pros and cons with your IBD team

In short, not at this time.

IBD occurs less commonly in regions where worm infections are common.

As these nations become more westernised/ wealthier they have more cases of IBD – perhaps as a result of having fewer worms. However, a lot of other things change too – including diet. There have been several laboratory studies that suggest worm therapy ought to help treat IBD. However, a recent article combined the very best human-trial data and concluded that, at this time, there was no evidence to support the use of worms to treat IBD in humans.

CONNECT • SUMMER 2018 • 33

MY LIFE

‘A SENSE OF FREEDOM HAS REACHED EVERY AREA OF MY LIFE’ IBD and anxiety had got in the way of activity and travel for Rachel Green, 47, until she had an ileostomy. Since then she’s been living every day to the fullest Sixteen years of IBD takes its toll and a lot of hesitancy had crept into my life. I had become anxious about where the bathrooms were or what I’d do if I needed the toilet when out and started making life choices around those concerns.

Nine months after surgery I was made redundant from my job, which turned into a really positive experience. It was time to branch out and work for myself.

That sense of freedom and independence has reached every area of my life and made me feel the most alive I’ve felt in years – and that’s one of the reasons I went skiing a year after my surgery. I’d tried it before but felt I never really got the chance to find out how much I enjoyed it. I had the most amazing time.

I was scared to fly, worried about going out to dinner and eventually it was like I was living life on a postage stamp, especially when I came out of remission at Christmas 2015 and all of my drugs failed.

Choosing surgery was a big decision but absolutely the right one after a year of being very unwell and I had no doubts, despite a lot of fear about what life would be like. When I woke up at KIMS Hospital I felt better despite having just had major surgery.

Six months later I got a bike.

That was the beginning of getting back into activity and getting out. I was so thrilled to be alive, to do what I wanted and go wherever I liked without a second thought.

The stoma nurses at Medway Hospital are wonderful – personable, human and kind. They introduced me to a physical recovery programme and I was also able to access counselling.

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Rachel Green hits the slopes

I AM GRABBING LIFE AND ALL IT OFFERS WITH BOTH HANDS Both gave me a structure to get back to life and fitness in an appropriate way. Life post-surgery can be very isolating so finding a community of like-minded people helped so much.

I also found an online group of athletes with ostomies where we might talk more about sport than about our health, but we’re in the same position.

Most of the time I manage my ileostomy without any problems. The couple of incidents I have experienced have made me realise how well I’ve adapted. I’ve had a bag explode in a hotel bed and in situations like that you’re either floored or deal with it, so I go for the second option.

A problem managed is not a problem.

I went to Italy and had to work out how to empty my bag in tiny mountainside cubicles and ensure I was well hydrated. The following month I went to Austria for a few days and fitted in a day’s skiing, and now I’m hoping to go to Canada to do glacier kayaking, which really sums up how surgery has changed my life for the better.

IBD wasn’t my fault but I am responsible for how I respond to it. That’s why I am grabbing life and all it has to offer with both hands.

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

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FIND AN IBD NURSE SPECIALIST Need help locating expert support and advice on your IBD? Crohn’s and Colitis UK believes that access to IBD nurse specialists is vital for people living with IBD to get quick and effective care.

Find advice lines and services run by specialist IBD nurses in all areas of the UK by using the interactive map – and information on what to do in an emergency – on the Crohn’s and Colitis UK website.

crohnsandcolitis.org.uk/IBDnursemap

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crohnsandcolitis.org.uk