Connect Spring 2018

CHARITY UNVEILS PLANS FOR THE NEXT FIVE YEARS

IBD TOOLKIT ON WAY TO YOUR GP P12

CONNECT Spring 2018 / No 89 / crohnsandcolitis.org.uk

Your membership magazine

‘OUR ROLE IN TESTING A NEW MEDICINE’ P16 AN UNEXPECTED DIAGNOSIS P24

STUDENTS SHARE THEIR STORIES ON SCREEN P23

Y T I S R E E V I G N U ALLEN H C

INS K N E NJ O N P20 N A A I M H A R ER D T A A U O AD ISIS INT R G E TR CR THEA HER IBD S TURN

GET INVOLVED WITH YOUR LOCAL NETWORK

Volunteer with your local network to raise awareness in your area. Networks provide the opportunity for anyone affected by IBD to meet other people who understand the challenges of these conditions and enable them to access information and support from the national charity.

For more information visit crohnsandcolitis.org.uk/volunteering

WELCOME

CHARITY UNVEILS PLANS FOR THE NEXT FIVE YEARS

IBD TOOLKIT ON WAY TO YOUR GP P12

CONNECT Your membership magazine

Spring 2018 / No 89 / crohnsandcolitis.org.uk

‘OUR ROLE IN TESTING A NEW MEDICINE’ P16 AN UNEXPECTED DIAGNOSIS P24

Y ERSIT UNIVALLENGE CH

STUDENTS SHARE THEIR STORIES ON SCREEN P23

S NKIN ON JE A P20 IANN TE RH TO A DRAM ADUA IN TRE GR CRISIS THEA HER IBD S TURN

On the cover: Drama graduate Rhiannon Jenkins.

Read her story on page 20.

‘YOU CAN’T DRESS UP FARTS, POOS AND SORE BELLIES’

Photo: Gemma Day

ANGELA CATLIN

WE ARE LED

BY THREE CORE VALUES

I

This issue’s guest editor is Vikki Garrick, paediatric IBD nurse specialist at Glasgow Royal Hospital for Children

have been a paediatric IBD nurse for about 11 years. You can’t dress up farts, poos and sore bellies, especially when you’re dealing with children and young people. They need to understand exactly what we’re talking about, so technical terms don’t work.

It’s important to me that we look at a patient’s whole life and not just how their gut functions. If you’ve got dodgy guts, sitting on the toilet is bad enough, but not being able to think straight, being chronically fatigued, trying to do your exams, trying to get a boyfriend or girlfriend as well – that is so challenging and it’s what our patients go through every day. We are really aware of that and work hard to help them cope with the day to day management of their condition.

My patients range from around 18 months to 18 years old, and they’re a great group who never cease to amaze me. Last year, one of my patients was in for treatment between exams, and sat them with a cannula in – and he got five Highers.

I always say you can’t let IBD drive the bus

– and I think that’s a sentiment echoed in Ibrahim’s story (see page 28).

It’s great that so many people are talking openly about their experience of IBD, whether it’s in the magazine, on social media, on patient panels or in campaigns such as those led by Crohn’s and Colitis UK. Along with a couple of our patients, I fed in to the charity’s Transition publication for those moving from paediatric to adult care. It’s great to see videos available now too, with people like Rhiannon sharing their stories (see page 20).

Lastly, when I started in post, former chief executive of Crohn’s and Colitis UK Richard Driscoll came to see the team. He was the first person I had come across who wasn’t medical but was still very focused on getting things right for patients. A fantastic man, I was very sorry to hear of his passing (see page 7).

Vikki Garrick

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 2018 • 3

XXXXXXXXX

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: l help you understand more about IBD, diagnosis and treatment options l provide information to help you to live well with your condition l help you understand and access disability benefits l be there to listen if you need someone to talk to l 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 Web chat (live online): crohnsandcolitis.org.uk/livechat MEMBERSHIP

01727 734465 FUNDRAISING

01727 734485

4 • XXXXXX 20XX • CONNECT

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

crohnsandcolitis.org.uk

SPRING 2018

CONTENTS

#crohnsandcolitisuk

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

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

NOTEBOOK 6 On a mission Crohn’s and Colitis UK unveils its five-year plan 12 GPs get new toolkit Online resource to improve diagnosis and patient care

Editorial assistant Jonathan McIntosh

YOUR VOICE

Sub-editors Sam Bartlett, Sian Campbell, Kirsty Fortune, Kirsty Wilkins

28 ‘Never let your condition define what you can and can’t do’ Chef Ibrahim Bellal shares his tips on living with IBD 33 Just ask Experts answer your queries 34 My life Shelley Lawes runs a support group and is on the St Mark’s Hospital patient panel

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 ISSN 2059-8408

PAUL STUART, PAUL UNDERHILL

I FELT THE PATIENT VOICE WAS BEING HEARD FEATURES

24

34

GET YOUR TRAINERS ON AND JOIN US FOR WALK IT

See crohnsandcolitis.org.uk/walkit

16 Tried and tested Two patients share their experiences of a medication trial, giving evidence that fed into the drug’s appraisal process 20 Press play Drama graduate Rhiannon Jenkins was diagnosed with Ulcerative Colitis when she was 17. She features in a series of new videos aimed at young people with IBD 24 Blood and guts Peter Bond had gut problems as a teenager. It was more than 40 years later before he was diagnosed with Crohn’s Disease

SEE THE LEAFLET INCLUDED INSIDE THIS MAGAZINE

CONNECT • SPRING 2018 • 5

NOTE BOOK NEWS FROM AROUND THE UK

LOOKING AHEAD CHARITY CHIEF EXECUTIVE DAVID BARKER SETS OUT PLAN FOR THE NEXT FIVE YEARS

O

ver the last 12 months, Crohn’s and Colitis UK has consulted extensively with members, supporters, volunteers, clinicians and other healthcare professionals to help shape its future direction.

The result is a bold new vision for the charity – “Improved lives today.

A world free from IBD tomorrow” – and an ambitious strategic plan that will direct the charity’s

work over the next five years. Crohn’s and Colitis UK’s chief executive David Barker outlines the five core areas that the charity will be focusing on to deliver the greatest possible impact for everybody affected by Crohn’s and Colitis.

He says: “Our mission over the next five years is to break the taboos around Crohn’s and Colitis, drive pioneering research, support and bring people together, and tirelessly campaign to improve lives.”

David Barker talks vision

WHAT WE WANT TO ACHIEVE WE WANT EVERYONE WANT 2 WE TO UNDERSTAND TO DRIVE WORLDCROHN’S AND COLITIS CLASS RESEARCH If there is only one thing Funding research is fundamental to achieving we could do to benefit all patients (other than a world free from Crohn’s finding a cure), it is to create and Colitis, and it is why much greater awareness many support Crohn’s and and understanding of Colitis UK. We have a rich Crohn’s Disease and history of funding research Ulcerative Colitis among and in 2017 we were proud to publish a new report on the public. the impact of the work we These invisible and have funded over the last often misunderstood 10 years. conditions need Over the next a significantly five years we higher profile, intend to invest and we must £7.8m. We will help others find and fund to better Research: Dr the very best understand the Miles Parkes research projects challenges and and support the implications of living development of future IBD with Crohn’s and Colitis.

To achieve this, we aim to experts. This will ensure that the progress we are making mobilise the community today will be built on and across the UK in order to accelerated in future years. create an environment We will create powerful where it is easier to talk partnerships and alliances about these conditions.

1

IN MEMORY OF

RICHARD DRISCOLL 1950-2017

Support and a sense of community are essential

WE WANT HIGH-QUALITY, SUSTAINABLE CLINICAL CARE We want to ensure WE WANT TO that every patient – 3 SUPPORT AND wherever they live, EMPOWER PEOPLE whatever their age – When people have receives world-class information, better treatment and care. practical help and We will build emotional productive support, they partnerships can take that make a more control difference of their and we will condition, give a IBD nurses: and live fuller powerful voice key for care and freer lives. to patients Over the next across the UK. five years we will invest in We will come together areas that will help to and mobilise our empower and support supporters in order to people affected by challenge the status Crohn’s and Colitis, quo and help influence ensuring better services policy – driving up care and outcomes for all. standards for everyone.

to ensure that every pound we spend has the greatest possible research impact.

4

WE ARE AMBITIOUS, WE ARE COMPASSIONATE AND WE ARE STRONGER TOGETHER

WE WANT AN EARLY, ACCURATE DIAGNOSIS FOR ALL Early presentation of symptoms and early diagnosis help to deliver faster interventions and better outcomes.

We will focus on helping patients and doctors spot signs early, so as to swiftly get the treatment and care needed. Our work with the Royal College of General Practitioners is a vital part of this (see page 12).

5

We cannot achieve this alone – more than ever we will need to come together to expand the work of the charity and help raise the vital funds required to deliver on our promises. We will be guided by our new values every day: we are ambitious, we are compassionate and we are stronger together.

Sadly, we report that Richard Driscoll, former chief executive of Crohn’s and Colitis UK, passed away in October following a heart attack.

Richard served the charity for 20 years, originally as director and then chief executive of the National Association of Colitis and Crohn’s Disease, and as chief executive of Crohn’s and Colitis UK. David Barker, Richard’s successor and Crohn’s and Colitis UK’s current chief executive, says: “Anyone who had the pleasure of working with or meeting him will know he was engaging, warm and compassionate.

He worked tirelessly and selflessly for the charity and was enormously popular. We will miss his friendship, wisdom and determination to improve the lives of everyone affected by Inflammatory Bowel Disease.

“After leaving Crohn’s and Colitis UK in 2012, Richard continued to help people affected by IBD by working on a variety of projects in the UK and internationally. His impact in the field of gastroenterology has been enormous and he will be sorely missed. Of the many legacies Richard has left, Crohn’s and Colitis UK has to be one of his finest and, at the appropriate time, we will find a way to ensure that his memory and legacy live on within the charity.”

FOR MORE INFORMATION Visit Richard’s memorial website at richarddriscoll.memorial

crohnsandcolitis.org.uk/ strategy

CONNECT • SPRING 2018 • 7

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XXXXXXXXX Volunteers Linda and Dougie Donald (second from right and right)

YOU CAN TALK TO PEOPLE WITH THE SAME CONDITION AS YOU

Nassmah, 28, only signed up for the London 10k WALK IT a week before it took place but was inspired to do so to raise awareness about IBD and to encourage others to learn about and support the cause.

Nassmah, who was diagnosed with Crohn’s in 2009, finds that walking 10km is doable. While she didn’t find it much of a physical challenge, “the emotional gratification was manifold,” she says. “A different scale of the disease came to mind, amplifying how eager I am TWO WALK IT PARTICIPANTS AND A VOLUNTEER to help cure it.”

SHARE THEIR EXPERIENCE OF THE FUNDRAISER Nassmah’s partner James ack Craigie wanted Jack, who was diagnosed pain in his joined her and Jack Craigie to take part in with Crohn’s Disease in knees and both were pleased walked it in 2017 the Plymouth 10k 2015, had a great time. “The heels but he still with the turnout.

WALK IT to increase atmosphere was incredible,” wanted to participate.

“The event was inspiring awareness of he says. “Throughout the “Afterwards I was tired and uplifting. I saw people Inflammatory Bowel walk, I received massive and in slight pain, but I with more apparent Disease as well as raise support from friends and was extremely proud that I physical ailments pushing money for research. family, and even from people had managed to persevere,” themselves to complete the “I wanted to inspire others who didn’t know me but he says. walk and doing so with a who are my age and who who wanted to help.”

Jack was delighted to smile. It inspired and are fighting the condition,” Prior to the walk, Jack smash his target of £250 empowered me mentally says the 14-year-old. had struggled with joint for Crohn’s and Colitis UK. and emotionally,” she adds.

“I was amazed to hit £1,065 Nassmah’s initial target from family, friends and my was to raise £145 – more parents’ colleagues. Their than enough for one day’s WHAT YOU NEED TO KNOW employers added another research by Crohn’s and Join us for WALK IT in 2018: Plymouth on Saturday 5 £500 each to raise more Colitis UK. But, because of May; Bristol on Saturday 12 May; Swansea on Saturday than £2,000.” support from friends and 2 June; London on Saturday 9 June; Manchester on Jack will definitely take family, she raised 10 times Saturday 16 June; Edinburgh on Sunday 24 June; part again next year. “You that – £1,420 in total.

Newcastle on Saturday 30 June and Birmingham can share your story and “I will definitely on Saturday 7 July. To sign up or volunteer go to talk to people with the participate in 2018 and will crohnsandcolitis.org.uk/walkit or email same condition as you, try to bring more friends fundraising@crohnsandcolitis.org.uk something that doesn’t along. It is a humbling often happen,” he says. experience,” she says.

GET YOUR TRAINERS ON

J

8 • SPRING 2018 • CONNECT

Providing support to the thousands of participants are hundreds of volunteers. Linda Donald and her husband Dougie helped out at the London WALK IT event.

“My 24-year-old stepdaughter was diagnosed with Crohn’s at the age of 21.

She has had surgery and is now on medication for life. I, too, have Ulcerative Colitis. I chose to volunteer rather than walk because I was having a flare-up.”

Linda most enjoyed chatting to other volunteers, swapping stories, handing out medals and cheering the walkers as they finished.

She encourages others to volunteer, as she appreciated the camaraderie and the chance to encourage others. “Taking part or volunteering are equally important,” she says.

WALK IT 2017 IN NUMBERS

4,868 8 331 £458,546 walkers

locations

volunteers

SHUTTERSTOCK

raised

Walkers at the Plymouth event in 2017

Cricketer James Tredwell in action

CRICKET COUP FOR CHARITY MONEY RAISED FOR CROHN’S AND COLITIS UK IN JAMES TREDWELL’S TESTIMONIAL YEAR

E

ngland international and Kent County cricket player James Tredwell celebrated his testimonial year at the club in 2017, using it as an opportunity to raise money for Crohn’s and Colitis UK. The total raised is still being tallied, and will be shared with the Professional Cricketers’ Association’s Benevolent Fund. On James’ behalf, a committee arranged various fundraising events during the year, including golfing days, a football match and dinners attended by England players Michael Vaughan and Graeme Swann, as well as coaches Paul Farbrace and Trevor Bayliss.

“One of my favourite events was the day to promote Kentish produce, as I grow my own fruit and veg,” James says.

James chose to support Crohn’s and Colitis UK as he and his wife Beth relied on the charity as a source of information when she was diagnosed with Ulcerative Colitis in 2012.

“Beth is a nurse and when she was diagnosed she was actually working in an endoscopy ward,” says James.

Although Beth already knew a lot about the condition, and had

WIN A SIGNED MINI CRICKET BAT One lucky Connect reader can win a signed mini cricket bat from James Tredwell. Visit crohnsandcolitis.org.uk/cricket to enter. Competition closes at noon on Friday 11 May 2018.

good care, the family still felt its impact.

“During flares it’s been difficult, especially when I’ve been out of the country on tours,” says James. “We have two young boys and there are times when she hasn’t been as accessible as they would like. The condition brings challenges that are not just medical.”

James adds that the conditions are invisible so many people don’t realise what those with Crohn’s and Ulcerative Colitis face. “The challenges are often overlooked,” he says. “Crohn’s and Colitis UK is vital to get the message out there. Our aim has been to raise money and hopefully the profile of the charity too.”

CONNECT • SPRING 2018 • 9

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TWO OF A KIND

REGISTRY GIVES RESEARCHERS INSIGHT INTO IBD IN TWINS

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esearchers seeking new insights into the inherited and environmental factors influencing IBD have set up a national twin registry and biobank in London.

The IBD Nixon Twin and Multiplex Registry at the Chelsea and Westminster Hospital holds clinical information and biological samples (blood, urine and stool) of 92 sets of UK twins.

Crohn’s and Colitis UK supported the work with a grant of £5,000, and the twin registry has been made possible with funding from the Jessie and Thomas Tam Charitable Foundation.

Dr Marcus Harbord leads the research and Dr William Blad has helped to collate the twin samples over the last two years as a study investigator on the project.

“If you’ve got a twin you’re more likely to have the disease,” said Dr Blad.

“If you’ve got two non-identical twins, a brother and a sister – and one has the disease, the other is more likely to have IBD than a sibling of theirs.

This tells you their genetics will be similar, so there’s an environmental factor.

Something that those twins have gone through has put them at a higher risk.”

The first analysis from the biobank has looked at the gut microbiota of twin pairs, where one had IBD

10 • SPRING 2018 • CONNECT

Dr Marcus Harbord (left) and Dr William Blad (right)

and the other didn’t, building on the fact that gut microbiota (the microbes living in the intestine) play an important role in IBD. People with Crohn’s

Disease and Ulcerative Colitis show less diverse microbiota than those without IBD, and the first analysis of the twins’ samples confirmed this finding. IBD patients had

SOMETHING THAT THOSE TWINS HAVE GONE THROUGH HAS PUT THEM AT A HIGHER RISK

less diverse gut microbiota compared to healthy twins – and scientists particularly found less of a bacteria called F. prausnitzii in patients with Crohn’s.

“For a lot of this initial work we’ve gone to patients’ houses and collected samples that they’ve frozen themselves. When we’ve tested them, they’re showing what we’d expect – supporting current data – which means we can go forward with further research,” said Dr Blad.

He added: “By analysing the samples from twins we may understand more about what environmental factors could make you more predisposed to getting IBD, which may help create new treatments or preventative techniques.”

FOR MORE INFORMATION crohnsandcolitis.org.uk/twins

RESEARCH UPDATES

A ROUND-UP OF SOME OF THE RECENT SCIENTIFIC WORK THAT HAS BEEN SUPPORTED BY CROHN’S AND COLITIS UK

CLASSIFYING IBD-RELATED BOWEL CANCER Researchers led by Simon Leedham of the Wellcome Trust Centre for Human Genetics, University of Oxford, have been working with specialist gastroenterologists to examine mutations in the DNA of colitisassociated cancers.

With a grant of £115,500, the scientists were able to find mutations linked to colitis-associated cancers and their precursor lesions, and are now seeing whether they can better discriminate between colitis-associated cancer and sporadic bowel cancer.

SHUTTERSTOCK, CNRI/SCIENCE PHOTO LIBRARY

FOR MORE INFORMATION crohnsandcolitis.org.uk/ bowelcancerresearch

X-ray of an inflamed colon and rectum

THERE IS NO KNOWN CURE FOR CROHN’S OR COLITIS

Mitochondria: a ‘cell battery’

THE ROLE OF DAMAGED MITOCHONDRIA IN CAUSING IBD

D

r Gwo-Tzer Ho has been conducting research into damaged mitochondria and their role in IBD, with the help of an £8,000 grant.

Mitochondria are the ‘batteries’ inside cells

that help maintain their health and function.

However, the mitochondria inside the cells lining the large bowel are exposed to many things that may damage them, and in people with IBD these damaged mitochondria

can leak into the bloodstream – triggering an inflammatory immune response.

Dr Ho found that mitochondrial DNA levels are particularly high in people with more severe forms of IBD. He is now pursuing possible treatments by examining whether this DNA activates the immune system through a particular receptor (a special structure found on the surface of cells).

FOR MORE INFORMATION crohnsandcolitis.org.uk/ batteries

INFLAMMATORY BOWEL DISEASE AND MUMS-TO-BE Crohn’s and Colitis UK granted £82,500 to support an in-depth study into the transition to motherhood for women with Crohn’s Disease and Ulcerative Colitis.

Led by Professor Anna Madill of the University of Leeds, 22 mothers of children aged between two and seven took part.

They shared their experience of planning and starting a family, and

OUR RESEARCH GIVES REAL HOPE BUT WE URGENTLY NEED YOUR HELP

coping with young children, as a mother with IBD. The aim was to identify key challenges, support mechanisms, coping strategies and unmet needs in mothers with IBD. The study led to the creation of three videos on planning a family, pregnancy and early motherhood

PLEASE TEXT

HOPE

TO 70500 TO DONATE £10

that are viewable via the Crohn’s and Colitis UK website.

FOR MORE INFORMATION crohnsandcolitis.org.uk/ mumstobe

100% OF ALL DONATIONS WILL FUND PIONEERING RESEARCH

Texts cost your donation plus one standard-rate message. The charity will receive 100% of the donation. Always get the bill payer’s permission.

CONNECT • SPRING 2018 • 11

NOTE BOOK THE TOOLKIT WHAT’S IN IT?

1 Key facts about Crohn’s and Ulcerative Colitis

2 An overview of IBD and top tips about the conditions

3 Clinical guidance (for example, from NICE)

4 Information on identifying and managing IBD

5 Advice on medication and flare management

6 Details of complications that may arise

7 Resources for training

8 Information for patients and carers

9 Information for NHS managers and commissioning organisers

10 Podcasts 12 • SPRING 2018 • CONNECT

TOOLKIT FOR GPs UNVEILED

A NEW ONLINE RESOURCE ON IBD HAS BEEN DEVELOPED BY THE ROYAL COLLEGE OF GPs AND CROHN’S AND COLITIS UK

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new toolkit to help GPs and other primary health teams better support patients with Inflammatory Bowel Disease is now being used by medics across the country. The online resource, www.rcgp.org.uk/ ibd, is accessible via the Royal College of General Practitioners website and has been produced as part of an RCGP ‘spotlight project’ that aims to raise the profile of IBD among healthcare professionals.

The toolkit is a ‘one-stop shop’ of information to help GPs identify people with IBD and to refer, support and treat them appropriately, working with their specialist team.

Patients can also access the information free of charge on the RCGP website.

Jackie Glatter, Crohn’s and Colitis UK’s health and public service development manager, has been instrumental in creating the toolkit with Dr Kevin Barrett, the spotlight

project’s clinical champion, Rachel Fowler, the patient champion, and Natalie Woods, project manager at the RCGP. Jackie said: “At the start of the project, we conducted a survey, which had responses from more than 500 GPs, trainee GPs and other primary care professionals.

This helped us to identify the areas that would be most useful to focus on, including the use of a diagnostic stool test, flare management, monitoring for risks and complications, and supporting people to stay well.”

The site also features two podcasts. In one, Dr Barrett talks to Crohn’s and Colitis UK patient champion Rachel Fowler about her experience and the kind of support that she needs from her GP. In

IT IS A ‘ONE-STOP SHOP’ OF INFORMATION TO HELP GPs IDENTIFY PEOPLE WITH IBD

the other, he speaks to IBD nurse Vanessa Cambridge about how primary and secondary care can work together to provide the most effective care for IBD patients. A 30-minute e-learning module about IBD is also available.

Amanda Quincey, Crohn’s and Colitis UK trustee and patient adviser on the spotlight project, says she welcomes the toolkit.

“It’s helpful to have this information all in one place and to have RCGP backing.

When a patient with possible IBD symptoms goes to see their GP, the doctor will be able to access lots of useful and detailed guidance on what to do

ALL MAPPED OUT FIND AN IBD NURSE NEAR YOU

KUMAR SRISKANDAN / ALAMY

From left to right: RCGP project manager Natalie Woods, patient champion Rachel Fowler and Dr Kevin Barrett at the first GP workshop in Brighton

next in terms of treatment or tests.

“Another patient representative and I wanted to make it clear in the toolkit that while there are red-flag symptoms for IBD – such as passing blood or mucus – a lot of people don’t have those signs, so they may have continual gastro problems with no known cause. I have heard of countless patients with this experience and it chimes with my own.

I had an IBS diagnosis for 15 years before I was diagnosed with Crohn’s four years ago. It’s important for GPs to know that atypical symptoms are common, and that they can refer patients for the faecal calprotectin test to differentiate between IBS and IBD.”

RCGP.ORG.UK/IBD

An interactive map listing specialist Inflammatory Bowel Disease nurses around the country is one of the many useful tools added to the Crohn’s and Colitis UK website recently.

The new resources include an explanation of the role of the IBD nurse, as well as a video of a day in the life of a specialist IBD nurse at the Royal London Hospital. Crohn’s and Colitis UK service development IBD nurse Isobel Mason says these will be helpful for both

patients and people interested in becoming IBD nurses.

There are also resources for IBD teams, NHS managers and health professionals about planning and expanding their IBD team.

“The resources tie in with our IBD nurse campaign, and will be useful for both patients and health professionals.

The map also includes out-of-hours emergency contact numbers,” says Isobel.

USE THE MAP crohnsandcolitis.org.uk/ ibdnursemap

PRESCRIPTION RELIEF

IBD PATIENTS PROTECTED FROM PROPOSED RESTRICTIONS NHS England will not propose restrictions on prescribing over-thecounter medications for people with chronic conditions such as Inflammatory Bowel

Disease, it was announced in December.

It had been proposed last year that prescriptions might be restricted for low-cost medications that are available over

NHS England is reviewing what is available on prescription

the counter, including those used to treat diarrhoea, constipation and mouth ulcers, for both short-term illnesses and chronic conditions.

Crohn’s and Colitis UK voiced strong opposition to the proposals in a consultation, drawing on feedback from those living with IBD, and expressed fears about the impact the changes could have on their health and quality of life.

“This is clear recognition that they have listened to our concerns,” said Sarah Berry, Crohn’s and Colitis UK’s health policy and public affairs officer. “However, we will be monitoring how this will be put into practice and responding to further proposals relating to vitamins, probiotics and suncreams.”

CONNECT • SPRING 2018 • 13

NOTE BOOK

of the IBD community. The success of the campaign is testament to the power of your voice.”

The ‘Not Every Disability is Visible’ campaign has been inspired by people living with IBD, notably 11-year-old Grace Warnock. Grace designed a sign, which has been adapted and can now be found in many locations, such as the Scottish Parliament. Marks & Spencer, football clubs and some local authorities are also among those to have adopted the sign.

The ‘Not Every Disability is Visible’ campaign is now targetting travel hubs

SUPERMARKET SWEEP

S

STORES COMMIT TO ‘INVISIBLE ILLNESS’ TOILET SIGNAGE

ainsbury’s has joined the UK’s nationwide. Along with the other major major supermarkets Asda, supermarkets, this will mean that toilet Tesco, Morrison’s and signs recognising ‘invisible illnesses’ Waitrose in announcing the will appear in more than 2,500 stores. roll-out of accessibleTo achieve this, members and toilet signage this year. This supporters of Crohn’s and follows a successful Colitis UK sent nearly campaign by Crohn’s 20,000 emails to and Colitis UK, its supermarket bosses. members Jo Pearce, corporate and supporters. partnerships manager By the end of at Crohn’s and Colitis March, Sainsbury’s UK, said: “This would will update toilet signs not have been possible Signs of in all of its 603 stores without the huge support the times

TRAVEL WITH IBD CAMPAIGN GATHERS PACE Crohn’s and Colitis UK has turned its attention to the ‘Travel with IBD’ campaign, focusing on travel hubs around the UK. More than 49,000 emails have already been sent, with 15 out of 27 targets positively engaging with the charity. You can support the campaign by sending our pre-written email to the bosses of airports, and rail and service stations. So far, Edinburgh and Newcastle airports have adopted the toilet signs, as have the following: l Arriva Trains Wales l ASG Group l Belfast International Airport l Birmingham Airport l Leeds Bradford Airport l London Gatwick Airport l London City Airport l London Heathrow Airport l London Midland Trains l Manchester Airport Group l Moto Hospitality l Roadchef FOR MORE INFORMATION crohnsandcolitis.org.uk/accessibletoiletsigns The Travel with IBD campaign was developed with, and partially funded by, pharmaceutical company Takeda UK

ASSEMBLY WELCOMES IBD WALES WELSH POLITICIANS HAIL NEW GROUP The Welsh Assembly and Dr Dai Lloyd, chair of the Health, Social Care and Sport Committee, hosted a reception to celebrate the

14 • SPRING 2018 • CONNECT

inception of IBD Wales at the end of last year.

IBD Wales was created

by Crohn’s and Colitis UK and the Welsh Association of Gastroenterology and Endoscopy, with the aim of championing improvements

to services for patients with Inflammatory Bowel Disease.

A quarter of all Assembly Members attended the event.

It is hoped that this will really help the charity’s work to improve health services across Wales.

David Barker (rig ht), Crohn’s and Coliti s UK CEO, at the ev ent

‘PUPILS WITH IBD BEING PUT AT RISK’ NINETY PER CENT OF SCHOOLS IN ENGLAND FAIL TO ADOPT LEGALLY REQUIRED POLICY

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round a million children at school in England with long-term medical conditions such as Inflammatory Bowel Disease are at risk because schools don’t know how to properly support them.

This was the finding of the Health Conditions in Schools Alliance, a coalition

THE LAW HAS BEEN IN PLACE SINCE 2014

of more than 30 charities, including Crohn’s and Colitis UK. Nine in 10 schools in England were not able to show they had policies in place to support their students with long-term conditions such as IBD, diabetes and epilepsy.

Since 2014, the law requires all schools in England to have a policy in place to support children with long-term conditions.

In October, due to schools’ lack of response to this statutory requirement, families and charities lobbied MPs, calling on the

11.5%

of schools in England have a medical conditions policy that meets statutory guidance

The alliance petition

minister for children and families to take action. This included asking schools regulator Ofsted to check the policies and their

72%

17%

of schools said Ofsted had not asked about their medical conditions policy

of local authorities confirmed that they had a medical conditions policy

implementation during inspections, while a petition of almost 50,000 signatures was delivered to the Department for Education.

Elliot James, young people and families development officer at Crohn’s and Colitis UK, said: “Every child with IBD deserves the same chance to succeed as the other children in their school.”

Snowglobe at The Mall in Maidstone

Be YoursELF

AWARENESS WEEK: IT’S ALL ABOUT BEING SEEN

Making IBD visible was the theme of Crohn’s and Colitis Awareness Week, which is held every year around the world from 1–7 December.

As ever, there was plenty of fun. Supporters shared a

Be YoursElf card on social media, and Crohn’s and Colitis UK built a giant snow globe in Maidstone, Kent.

The week began with Purple Friday, when supporters were encouraged

More than 7,000 supporters made and shared the Crohn’s and Colitis UK Be YoursElf card

to wear purple to increase awareness of IBD and raise funds.

Juliet Chambers, communications manager at Crohn’s and Colitis UK, said: ‘‘It was great to see so many members and supporters taking part in Purple Friday once again, which raised more than £4,000. Our

#MakingTheInvisibleVisible campaign really captured people’s attention which allowed us to raise awareness and understanding of these complex conditions.”

CONNECT • SPRING 2018 • 15

U

p one night feeding her newborn son Remy, Claire Purkiss was skimming through her Facebook page when she came across a post by Crohn’s and Colitis UK asking for patients who’d been part of the ustekinumab (Stelara) drug trial to share their experiences. It was a call-out for patient evidence that would feed into the drug’s National Institute for Health and Care Excellence (NICE) appraisal process.

Claire knew this was the biological drug that had helped her into remission from Crohn’s Disease and to start a family, after a short spell without medication, so she was keen to respond.

“It’s inevitable I will end up back on it at some point,” says Claire, 34, from south-west London, who was diagnosed with Crohn’s in 2012 after a decade of symptoms thought to be Ulcerative Colitis (UC). “You want to stick with what works and save other drugs for further down the line if needed. So when I saw the opportunity to get involved with the appraisal hearing I thought I’d try it because I wanted the drug to become available.”

Claire Purkiss was diagnosed with Crohn’s in 2012 after 10 years of living with Ulcerative Colitis

WORDS SIAN PHILLIPS PHOTOGRAPHS PAUL STUART

TRIED AND TESTED

Claire Purkiss and Nick Cox took part in the ustekinumab trial – then made their voices heard to help get it approved

16 • SPRING 2018 • CONNECT

DRUG APPROVAL

DR MARK J. WINTER/SCIENCE PHOTO LIBRARY

ULTIMATELY, IF PEOPLE DON’T SPEAK OUT THEN THE PATIENT VOICE DOESN’T GET HEARD Nick Cox, a partner in a Cheltenham law firm, joined the ustekinumab trial in September 2012 thanks to his consultant gastroenterologist at Cheltenham General Hospital, Dr Richard Makins, who had spotted news of it. Nick had been diagnosed with UC in 1999 and, like Claire, was rediagnosed as having Crohn’s.

He recalls that moment with a wince, as it came “during the course of a rather public colonoscopy in 2010 where I was being used as a guinea pig for six consultants”.

To be assessed for the trial, Nick was put in touch with Dr Ian Shaw at Gloucester Royal Hospital and then with his “brilliant IBD nurse” Christian Loveridge, whereas Claire was seen at Southampton General Hospital.

For both, the trial was a success and the drug transformed their health.

When Nick was very ill in the early 2000s, even walking to the newspaper shop was a struggle and all he could do when he got back was lie down. Two severe flare-ups left him in hospital.

During the first, in 2003, he lost four stone within six weeks, and then in 2010 he lost two stone.

“It became almost impossible to function during the really bad bouts because you have no energy. It was depressing. When I was first diagnosed I had two young children of two and four, and I was seriously concerned about the effect seeing their dad in that state was going to have on them,” says Nick. “Horrible things that happen when you have any form of bowel disease. Having to run to the loo, occasionally not making it. Even when

WHAT IS USTEKINUMAB? l Also called Stelara, ustekinumab is licensed for treating adults with Crohn’s Disease. l It is a biological drug that may be given to patients for whom conventional therapy or TNFalpha inhibitors

(such as infliximab or adalimumab) don’t work, have stopped working or can’t be tolerated. l Ustekinumab targets two naturally occurring proteins that play a key role in inflammatory and immune responses.

Ustekinumab targets the IL-12 protein

l T he first dose of ustekinumab is given intravenously and further doses as a subcutaneous injection (under the skin) that are selfadministered every eight or 12 weeks.

Find out more about drugs used in IBD in our Taking Medicines information sheet, available at crohnsandcolitis.org.uk/publications

Nick Cox’s Ulcerative Colitis was rediagnosed as Crohn’s Disease in 2010

CONNECT • SPRING 2018 • 17

DRUG APPROVAL I’d been well enough to go for a two- or three-mile walk I was always thinking: ‘where’s the nearest loo, is there a hedge I can dive behind if I’ve got problems?’ What it does to you mentally is sometimes almost as bad as what it does to you physically.

“You stop having a social life. We had to cancel a holiday as there was no way I could’ve popped on the ferry and gone to France. That was frustrating, not doing any of the activities my wife and I used to be able to. And not being able to look after my kids in the same way that my friends were doing was hugely frustrating.”

Claire, a physiotherapist at the Royal Brompton Hospital and mother to son Gryff as well as Remy, also had a rough patch before the trial. “I was taking quite a bit of time off work, cancelling plans at the last minute, not seeing friends, not going out with my husband … I was signed off work, which was rubbish for me and hard for my team, as they were one person down. I was really low, climbing the walls at home, fed up doing nothing and I had symptoms of bad arthritis, which meant that hobbling round the supermarket was as interesting as it got.”

Within a couple of months of starting the drug, however, both Nick and Claire noticed a huge difference to their health.

Nick says: “In spring 2013 I was beginning to improve quite drastically. I was going on Since his condition has improved, Nick Cox is able to cycle 30km to 40km regularly

18 • AUTUMN 2017 • CONNECT

BEING ABLE TO LEAVE THE HOUSE AND DO MY JOB WAS AMAZING walking holidays with my wife and long walks with my brother.

Before I was ill and during my remission I did a lot of sport. I am a keen walker and cyclist, played tennis and badminton, and went to the gym.

After about six months on ustekinumab I was getting back to where I’d been before. In fact, my condition has continued to improve to the extent that I am now, at 59, cycling 30km or 40km on a Sunday in the Cotswolds, which I didn’t think I’d be able to do.”

Claire experienced a similarly dramatic change to her health. “To go from even the smallest things being a struggle to being able to leave the house and actually do my job was amazing. I went back to work after a couple of months, when I started to feel the effects of the drug, and continued to feel good for the year I stayed on it.”

During one of Nick’s review sessions with Dr Shaw, the specialist mentioned that Crohn’s and Colitis UK was seeking patients to provide their perspective to the NICE appraisal hearing.

“I was convinced that this was something I could do to say thank you to all the people who’d looked after me,” says Nick.

Claire Purkiss feels she will end up taking ustekinumab again in the future

“Crohn’s and Colitis UK has been fantastic in raising the profile of IBD, particularly over the last 10 years.”

After submitting their initial testimony, they were asked by Crohn’s and Colitis UK to be patient experts at the appraisal, a role both were happy to take on.

“We had a telephone conversation about what would be involved if we agreed – what we’d be expected to do, any preparation required,” says Claire.

“Crohn’s and Colitis UK was good at staying in touch in the run-up to the hearing. We’d receive a call or email checking we were happy.”

They each had to prepare a detailed statement using a prompted questionnaire, which asked what it was like to live with IBD, what their experience of treatments had been in the past and the benefits of the trial.

Both had shown a good response to some medicines for UC before

HOW TO MAKE YOUR VOICE HEARD To find out more about how your voice and experience of living with IBD can help to improve care, take a look at the

patient involvement area of the website: www.crohnsandcolitis. org.uk/patientinvolvement

treatment failure, being rediagnosed with Crohn’s and eventually moving on to ustekinumab.

During his first hospital stay Nick had been given basiliximab, a drug that was in its first-stage clinical trial for UC, which he attributes to keeping him in remission for six years However, the drug wasn’t licensed and when a second severe flare-up led to hospitalisation, he tried infliximab and then adalimumab, neither of which kept his IBD under control.

Claire, meanwhile, had developed pancreatitis from azathioprine, then went on to infliximab, which gave her a reaction, before moving on to adalimumab. That drug – “thankfully”, she says – worked for five years. “It

See details of current and upcoming research at crohnsandcolitis.org. uk/research/take-partin-research

MY RELIEF WAS COUPLED WITH A SENSE OF HAVING CONTRIBUTED was my best period of health. I met my husband, went travelling and felt amazing,” says Claire. “But then I lost response to that, too.”

The ustekinumab hearing was in March 2017. “They let you have copies of all the papers beforehand,” says Nick, “and, being a lawyer, I wanted to read them – not that I understood an awful lot of what was

being said. But it tells you the process is incredibly rigorous.”

As well as evidence from the drug company, Janssen, there were submissions from a number of patient and professional associations, including Crohn’s and Colitis UK and the British Society of Gastroenterology.

“I was sworn to secrecy,” says Nick.

“You had to sign a confidentiality agreement. It took about 3.5 hours and my contribution lasted 3.5 minutes. Claire and I both had a chance to talk about our experience.”

Claire says that the atmosphere was formal but everyone was welcoming and the chair took time to introduce herself before proceedings began.

“I felt the patient voice was being heard. There was a lot to go through on the day – presentations about statistics and finance – but we were encouraged to talk. Ultimately, if people don’t speak out then the patient voice doesn’t get heard. It’s easy for people to get lost in the facts and figures but it’s not as relatable as hearing or reading evidence from somebody who has the disease.”

The pair’s efforts paid off and they received the excellent news that ustekinumab would be approved by NICE to treat Crohn’s Disease on the NHS in England and Wales. It has also now been approved north of the border by the Scottish Medicines Consortium.

“I was delighted,” says Nick, “I used a phrase which probably resonated with the committee: I said I felt wonderfully normal. I think this must apply to anyone who has been part of a successful clinical trial then has the uncertainty of not knowing whether the drug is going to be available.

Realising there was every chance that, because of financial constraints, the drug wouldn’t be licensed was haunting me. The relief I felt was coupled with a sense of having contributed to something that other people might benefit from.”

“Moments like this are so positive – things feel like they are moving forward and are providing more options for people living with the disease,” adds Claire.

CONNECT • SPRING 2018 • 19

PRESS Drama graduate Rhiannon Jenkins is one of five young people sharing their experience of IBD in a series of short films for Crohn’s and Colitis UK WORDS SIAN PHILLIPS PHOTOGRAPHS GEMMA DAY

PLAY

S

ome people prefer to keep their Crohn’s or Ulcerative Colitis diagnosis to themselves or a small circle of trusted friends and family.

Others, such as Rhiannon Jenkins, are happy to open up and tell others how it has affected their lives.

In one of five films created by Crohn’s and Colitis UK showing how young people tackle living with their condition, Rhiannon talks candidly about studying at university while coping with UC. It’s not the first time she has publicly shared her experience of the disease. In fact, two pieces of work towards her drama BA at De Montfort University were artistic representations of her life with UC. “My second-year performance was about how doctors can treat you like a bit of meat and so I literally used a piece of meat on stage during that,” says the 23-year-old from Harlow in Essex. “Then, in my third year, I made myself into a superhero who was

20 • SPRING 2018 • CONNECT

battling my disease and I got people up from the audience to play parts.

“One got to be my sidekick – my medication – and someone else got to be the enemy, which was my disease.

Then we had a big battle with mashed potato, glitter and bubbles.”

She laughs, adding: “It was a big visualisation of what it is actually like to have the disease, to have so much thrown at you.”

Her lecturers must have been impressed because despite periods of ill health – including a hospital stay that caused Rhiannon to miss two months of university – she graduated with a first-class honours degree last summer.

Rhiannon was diagnosed with UC shortly before her 17th birthday, when she was studying A-levels at college.

She’d had diarrhoea, fatigue and cramping, and was initially prescribed a couple of courses of antibiotics. When she started passing blood, she took advantage of her father’s workplace private health insurance and was able to get her diagnosis within a month.

Rhiannon Jenkins graduated with firstclass honours last summer

TRANSITIONS

Although it was an unexpected illness, at first Rhiannon thought she would be able to take medication and get on with her life. “But it didn’t go away,” she says. “Around a year later it got to a point where it was so bad and painful. I was vomiting all the time, passing loads of blood and had to have five blood transfusions. I knew it was serious but didn’t realise quite how serious. When I was admitted to hospital they said ‘How are you still alive?’”

She says she has never been as unwell since. “I’m just glad I got through all of my childhood without having any problems,” she says. It took Rhiannon an extra year to complete her A levels but she remained determined to go to university.

Her parents Colin and Julie were very supportive. “They weren’t worried about me and said ‘if you want to do this then don’t let your illness stop you from doing it’,” she says. “We discussed the fact that Leicester was a good distance for me to go as it was a two-and-a-half-hour journey by car or train so it wasn’t like I’d be in the Scottish Highlands if something happened.”

Leaving home, she says she was “mega scared” and full of anxiety about whether she could manage. She told herself: “The only way you are going to find out if you can do it is by trying.”

Heading off to De Montfort, Rhiannon successfully applied for a Disabled Students’ Allowance. “They gave me a laptop, printer and stuff like that so if I was feeling too unwell to go to the library to do my work I could do it in my accommodation,” she says.

“Also in the first year they subsidised my accommodation so that I could

WHEN I GOT TO HOSPITAL THEY SAID ‘HOW ARE YOU STILL ALIVE?’ CONNECT • SPRING 2018 • 21

have an en suite, because obviously it was a new environment and I didn’t want to be sharing a toilet if I was flaring.”

On arrival, she sought out the university’s disability officers. “I had a chat with them and they reassured me if I needed support then that was fine. One of the best things they said was ‘if you want to go and have a drink that’s totally fine’ and it made me feel so normal.

They weren’t going to judge me for wanting to be a normal student.”

In fact, Rhiannon’s medication at the time – methotrexate – meant she was advised not to drink alcohol. She says this helped her explain her UC to new friends.

“It was a really easy way to tell people about my condition because if they asked ‘Are you coming out for a drink?’ I could say yes but explain that I wouldn’t be drinking alcohol. If they wanted to ask more questions it was always right there from the beginning.”

She says the reaction she received was universally positive. “I don’t think I met anyone who wasn’t supportive.

None of my friends ever really judged me for not drinking in my first year and by the time I got to my second year my drugs were changed and I could actually drink alcohol if I wanted to. I moved in with some of my friends and they saw at first hand how bad it could be, and because they already knew about my condition they were really supportive and looked after me – making sure I had food or a cup of tea or anything when I was ill.”

She says her university teachers were also understanding, giving her extensions and deferrals when she needed them due to fatigue and ill health. “There were a couple of performances I physically wasn’t able to do at the time and they just rescheduled them till I was better.”

Rhiannon faced a couple of health bumps during her degree. A bad sinus infection caused by her medication meant she wasn’t well enough to leave 22 • SPRING 2018 • CONNECT

Rhiannon has created dramatic works based on her condition

her flat and was on antibiotics for a long while in first year. And just after Christmas in second year she had a big flare-up, leading her to call her parents to collect her and take her to UCLH (University College London Hospitals), where she receives treatment.

“I was exhausted, in so much pain and couldn’t go to my classes at all. I got in touch with my IBD nurse who said they wanted to admit me.”

Two weeks in hospital followed, during which she was moved on to the biological drug vedolizumab, which she still receives in infusions every eight weeks. It took another six weeks recovering at home before she could

return to Leicester.

“In some ways it was more frustrating when I got back to uni because I just wanted to jump back into everything – but couldn’t,” she says. “I had to take it slowly and get better. I’d have to think ‘I can only do a one- or two-hour class today because

MY PLAY IS MAINLY ABOUT THE WAY WE COMMUNICATE WITH EACH OTHER

TRANSITIONS

AS SEEN ON SCREEN See the films on the Crohn’s and Colitis UK website Rhiannon Jenkins is among five young people to share their experience of IBD on film for the Crohn’s and Colitis UK Companion and website.

The issues tackled in the five films include leaving home to go to university, schooling, telling others

The drama graduate has a number of projects on the go

I’m going to be exhausted afterwards’ but could see everyone around me was fine, which was really frustrating.”

Another challenge was changes to her body caused by her treatment.

“I was on steroids and eating quite a lot to keep my energy up, so I put on more weight than I was used to holding on me. Although I’m not overweight it did affect me for quite a while,” she says. “I’ve slimmed down a bit since then but not completely, and it did take a while to get at peace because it gave me stretch marks and things like that, which was rubbish and really affected my self-esteem.”

about your illness, relationships and transition into adult care.

The films were created

by Crohn’s and Colitis UK and supported by the People’s Postcode Trust, a grant-giving charity funded by players of People’s Postcode Lottery.

Cory, 17, talks about making the transition to adult care

FIND OUT MORE See the films at www.crohns andcolitis.org.uk/youngperson

Although she dated at university, others in my home town who have the she is single now and says that her condition, and I have a really good condition definitely helps separate the friend who I have not actually met wheat from the chaff when it comes to – she lives in Lincoln – but we became partners. While men have said they friends over Twitter and Facebook. understand her condition, when they It’s nice to have other people who realise it’s not going to go away they understand what it’s like.” are often surprised, she says.

A recent milestone was moving “They just don’t really know quite from the adolescent to the adult clinic, how to support me, and they may not which Rhiannon feels is going to be realise how serious it is. Then when I okay as she’s had a very supportive get ill they sort of realise and kind of team throughout at UCLH – not the back away a little bit. Those guys ‘piece of meat’ experience of her early weren’t right in other ways either.” appointments elsewhere, which She adds that she is fine with being inspired the university performance. single at the moment.

Rhiannon’s mother still attends Having graduated, Rhiannon is appointments with her. “It’s good looking at her options while to have someone there to take working part-time in a bar the information in and to MOVING TO and “doing bits and bobs” rationalise it,” Rhiannon ADULT CARE See the transition of theatre and drama. says. “I suffer from guide at Over Christmas she anxiety and if I get crohnsandcolitis.org. played an elf in shows for anxious I find it hard to uk/transition children at a local farm. take it all in. It can be This month she is directing overwhelming – we’re a play at a festival and writing dealing with strong drugs and competition at the Harlow surgeries and complications, so it’s Playhouse, as well as staging her own nice to have someone there for support.” play. She describes the theme as She takes citalopram for depression “First-world problems … mainly about and anxiety, and is also keen on yoga the way we communicate with each and meditation. Right now she is in other via social media and how we’re remission (though still experiences all disconnected”. fatigue) and is looking to the future.

Social media might have its “My parents are really supportive downsides, but Rhiannon says it has and I’m living at home again with them been invaluable for building a support and my brother Keir. I don’t know network – she will write a post if she’s exactly what I want to do but I’m having a bad day. “I’ve forged a few working, I’ve got my own money and friendships via the internet with I’m trying to find my career path.”

CONNECT • SPRING 2018 • 23

BLOOD AND GUTS Peter Bond saw his doctor about anaemia and found out he had Crohn’s WORDS SIAN PHILLIPS PHOTOGRAPHS PAUL UNDERHILL 24 • SPRING 2018 • CONNECT

F

or many IBD patients, diagnosis comes after a number of symptoms have indicated a health problem.

For Peter Bond, lead volunteer of the Dorset and West Hampshire Crohn’s and Colitis UK network, the route to diagnosis was more unusual.

In November 2004, Peter was a veteran blood donor (along with his

wife, Irene) and was all set to make his 52nd donation. He was surprised to be turned away and told that he was anaemic. Peter was advised to see his doctor, which he duly did, and was sent for blood tests. A week or so later, the GP called with the distressing news that Peter might have bowel cancer.

“It was a hell of a shock,” says the 70-year-old retired estate agent,

DIAGNOSIS

Peter suspects he may have lived with IBD since his teens

“because I didn’t feel that unwell.”

There followed a couple of “deeply worrying weeks” while Peter waited to see a colorectal consultant until he eventually decided to use his private medical insurance to expedite the diagnosis, which involved a colonoscopy.

“So in January 2005, I am in a cold theatre, surrounded by people I’ve never met, lying on a gurney in the

foetal position with my backside hanging out and feeling ever so slightly at a disadvantage,” he says.

“The sedation begins to work, but I can still feel the alien invasion of my most intimate parts and then I hear the consultant remark to his colleague: ‘It’s Crohn’s isn’t it?’”

Although Peter at that point had never even heard of Crohn’s disease, he says he felt immense relief that the

THEN I HEAR THE CONSULTANT REMARK TO HIS COLLEAGUE, ‘IT’S CROHN’S, ISN’T IT?’ CONNECT • SPRING 2018 • 25

I LOST MY CONFIDENCE AND DIDN’T WANT TO GO ANYWHERE other disease starting with a ‘c’ wasn’t to blame for his anaemia.

Then aged 57, Peter was swiftly put on steroids, including prednisolone.

Unfortunately, his condition soon flared up again and in October 2005 he was admitted to hospital with acute pain. He says the consultant said the Crohn’s was too far gone for treatment.

“So in other words had they diagnosed it earlier they might have got it more under control, but there was nothing they could do. The steroids hadn’t worked and I had a bowel resection.”

Peter had a right hemicolectomy (an operation to remove about half of the colon). “Afterwards, the surgeon told

DORSET AND WEST HAMPSHIRE LOCAL NETWORK

WHAT THE NETWORK DOES COFFEE MORNINGS “We have regular coffee mornings – one in the shopping centre in Southampton and another towards Ferndale on the west side of our district.” Peter says: “The problem with this disease is it’s not something you can talk about round the dinner table. It’s not a

nice subject and people often feel very isolated by it. We facilitate these meetings so we can share the charity’s information and meet others living with IBD.”

Colitis UK members in the region, and Peter has managed to get sponsorship from local businesses to cover the cost of mailing it to those who prefer a hard copy.

A NEWSLETTER The network sends regular newsletters to the 700-plus Crohn’s and

FUNDRAISING Peter reckons that in 2017 the network raised £5,000 to £6,000 for Crohn’s and Colitis UK. Events included a concert by the New Forest Rock Choir, line dancing and a tea party. The captain of the men’s senior section of the New Forest Golf Club, who has Crohn’s, dedicated his captaincy year to raise funds for the charity too.

The network takes a break on a sponsored walk

me that, due to the state of my plumbing, he felt I’d probably had Crohn’s for over 15 years,” he says.

“Until then, I never displayed the true symptoms of the disease,” says Peter. “Even after my diagnosis, the only way they knew how bad it was, was by having colonoscopies.”

Looking back, Peter now thinks there may have been a couple of clear signs that he had IBD much earlier.

He says he suffered “gut problems”, including a long-lasting duodenal ulcer as a teenager following a very stressful event when, aged 14, an unknown older teen held a five-inch rusty knife to his throat one day as he walked home from school in Wimbledon, south London. Thanks to a woman who stopped the attack, Peter escaped, but not without severe stress.

Then, in 1986, he suffered

DIAGNOSIS Peter lives in New Milton, Hampshire, with his wife, Irene

FIND YOUR LOCAL NETWORK crohnsandcolitis. org.uk/volunteer

“industrial-strength food poisoning” while holidaying in Las Vegas. “I reached stage two of food poisoning – this is when you stop worrying that you’re going to die and start worrying that you’re not going to!” After returning from the States, acute tummy pain led to the diagnosis of IBS, “but at the time nobody mentioned Crohn’s disease,” he says.

The surgeon who diagnosed him, Peter says, had an abrupt bedside manner, “but the one good thing he did was recommend that I join Crohn’s and Colitis UK. As a result, over the next few years, I learned more about my condition from them than any of the various professionals I had hitherto seen.”

For the past six years, Peter has led his local network and often gives talks

to inform others about IBD and the work of Crohn’s and Colitis UK. He is a member of the IBD patient panel at Southampton General (where he receives his treatment) and attends the patient panel at the Royal Bournemouth as a representative of the charity. He also shares his knowledge and experience at the local network’s events.

“Some people become very isolated by their condition,” says Peter, “and we

PEOPLE BENEFIT FROM INTERACTING WITH LIKE-MINDED SOULS

found that people are in denial, they can’t talk about it or they just don’t want to know about it – or they can barely leave the house. They benefit from interacting with like-minded souls who understand what they’re experiencing. It’s very cathartic.”

Peter lost his confidence around 18 months ago when his Crohn’s flared up quite badly. “I couldn’t do anything,” says Peter. “I would be in shopping centres and I would just have to dash to the loo and I became very nervous. I didn’t want to go anywhere in the end.” He says all their married life he and Irene liked to travel, “but in 2016, I wasn’t able to go anywhere because I couldn’t trust myself. I needed to be near a loo and go 15, 16 times a day.”

Back in 2009, Peter had sold his estate agent business to semi-retire with Irene to New Milton in Hampshire. “One of the last transactions I handled was the home of a retired colorectal surgeon. He told me quite emphatically that now I’d turned 60 the IBD would dissipate and I would have no more problems.”

In fact, Peter’s Crohn’s would continue to get progressively worse.

“I tried all the oral drugs, but none worked and one, methotrexate, put me in A&E for the night because I had such an adverse reaction to it,” says Peter. “I’ve been on all the biologic drugs, but we just seemed to be fighting a losing battle, so on 9 October last year, I had a panproctocolectomy.”

This operation is the removal of the entire colon, rectum and anal canal. It also means that Peter now has a stoma.

“I was told that there was no alternative, no drugs were working. So you get on and deal with it,” he says.

Now, recovering from his surgery, Peter says Irene has urged him to take it a bit easier. He intends to stand down as chair of the network in March this year.

Despite the discomfort he’s experienced from his surgery and getting used to his new stoma, Peter remains upbeat. “I’m still enjoying going out and banging the drum and giving presentations so I’ll carry on doing that,” he says. After all, he adds: “We’re just a bunch of people trying to help another bunch of people.”

CONNECT • SPRING 2018 • 27

YOUR VOICE OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

‘BE CONFIDENT IN YOURSELF’

Small lifestyle changes made a big difference to Birmingham chef Ibrahim Bellal in managing his condition

A

being diagnosed with Crohn’s fter finishing college in 2005, Ibrahim Bellal moved from Disease in 2006.”

Birmingham to London, aged Ibrahim spent the next few years 18, to become a chef. Securing coming to terms with his IBD, but being a trainee role at a five-star hospitalised with azathioprine-induced hotel in Kensington, Ibrahim was well on pancreatitis in 2010 marked the start of the way to securing his dream career, but a prolonged period of ill health. after a few months his health began to After being on a treatment of deteriorate. Within a year, his adalimumab since diagnosis, Ibrahim symptoms had come to a head. lost response to it in 2011 and had “I had lost quite a bit of keyhole surgery to remove most of his weight, didn’t have much small intestine. Ten days later Ibrahim appetite and was having developed a life-threatening severe diarrhoea, but I infection and had thought my symptoms emergency surgery to were down to working remove more of his 50 to 60 hours a small intestine, week,” says Ibrahim. which had become “After being referred to inflamed. gastroenterology, I had He was given a MRI scans, CT scans temporary ileostomy Ibrahim and his mum and endoscopies before and was in Chelsea WALK IT to raise funds for the charity

DO NOT BE AFRAID TO SPEAK ABOUT YOUR CONDITION and Westminster Hospital for five weeks.

In early 2012, Ibrahim was admitted to hospital with a blood clot on his lung.

Doctors adjusted his medication and put him on warfarin for six months. In late 2012 his first ileostomy was reversed.

Despite this change in medication,

‘FOUR CHANGES I MADE’ Ibrahim shares what has worked for him in managing his IBD

1

WORKING HOURS “I was working 50 to 60 hours a week in a five-star hotel in Kensington when I was first diagnosed. I’m still a chef but I’m doing regular hours now.”

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DIET “I now eat a healthier, more balanced diet.

I avoid acidic and spicy food. I use turmeric in my cooking as it’s known to help with inflammation.”

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EXERCISE “I’ve been training in bodybuilding for the last two years, so I’m exercising with weights, doing cardio and cycling and other little things.”

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ADRIAN JONES, SHUTTERSTOCK

Ibrahim found that making changes to his diet helped him control symptoms of IBD

Ibrahim remained dogged by symptoms of IBD: “I was still experiencing severe symptoms linked to my IBD, which the doctors thought was unusual because I hardly had any of my bowels left. I was taken in for more MRIs, endoscopies, colonoscopies and biopsies, and I was diagnosed with Colitis in 2013.”

Following this diagnosis, Ibrahim had a midline incision in January 2014 to remove an abscess the size of a cricket ball from his bowels and was given a temporary ileostomy and mucous fistula, which he had reversed

Everyone’s experience of IBD is different, and people find different diets, levels of activity and treatments work best for them

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GETTING THE RIGHT MEDICATION FOR ME “Every six weeks I have an infusion of infliximab just to keep my IBD in remission.”

later that year. Ever since, Ibrahim’s condition has remained relatively stable.

Now 30, he credits his medication – which includes regular infliximab infusions – and a change in lifestyle for this: “I’m still a chef but I work normal hours now. I have a well-balanced diet and go to the gym. These changes have made a drastic difference.”

For Ibrahim, the part Crohn’s and Colitis UK plays in raising awareness of IBD is vital and he hopes to fundraise for the charity in 2018 by taking part in Tough Mudder, a skydive and WALK IT – for which he raised £400 in 2017.

However, Ibrahim says his family and girlfriend are the best supporters he could ever ask for and have been vital to him becoming so comfortable with his IBD. Now Ibrahim uses his experience to support others in the IBD community via his Facebook page, Dealing & Living with Crohn’s Disease and Ulcerative Colitis.

“I set up the Facebook page thinking I could give people advice from my own experiences and motivate those living with IBD that anything is possible regardless of their condition,” says Ibrahim. “The best advice is: keep your head held high. Don’t be afraid to speak about your conditions. Be confident in yourself and never let your condition define what you can and can’t do.”

FOOD AND IBD See crohnsandcolitis.org.uk/publications for dietary information

Crohn’s and Colitis UK loves to hear about the great activities you do to help fundraise, promote awareness and support those affected by IBD. Whether you’re planning a charity event, doing something a little different to raise some money or want to share your experience of IBD to help others, get in touch and tell us what you’re up to.

TELL US WHAT YOU THINK We’d really like to know what you think of Connect. If you have any comments or feedback, we’d love to hear it.

What have you enjoyed reading? What would you like to see more of, and what could you do without? Is there an aspect of living with IBD that you feel we haven’t covered? What kind of advice would you like? Do you know someone with an inspirational story that we ought to be sharing?

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Top effort: the family celebrate raising over £4,000 for Crohn’s and Colitis UK

THE SWEET TASTE OF SUCCESS The Toop family’s coffee morning helps ‘pile on the pounds’ for Crohn’s and Colitis UK

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coffee morning organised by Ann Toop has gone down a treat with visitors, raising £4,167.45 for Crohn’s and Colitis UK in the process.

Held at The Rock Inn, Yelverton, the event included a sale of homemade goodies, a bring and buy, silent auction and a bottle tombola.

Sue Callow, the landlady of The Rock Inn, donated all proceeds from sales of coffee and cake during the event.

Ann’s family and friends also proved integral to the day. Lucy Toop set up

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a JustGiving page that received donations of more than £500.

The idea to run the coffee morning came from Ann’s mother-in-law, Joan, as a means to give back to Crohn’s and Colitis UK following the support it offered to Ann’s son, Richard.

Diagnosed with Crohn’s Disease when he was eight years old, Richard has had

surgery three times, most recently to have his stoma repositioned to his left side, as well as the removal of 50cm of his small bowel.

Now 31, Richard is on ustekinumab, a drug that received NICE approval in 2017 after Crohn’s and Colitis UK submitted strong evidence for its benefits.

The Toop family would like to thank everyone who contributed to making the morning such a success.

IT WAS A WAY OF GIVING BACK TO CROHN’S AND COLITIS UK

GET YOUR BAKE OFF ON Fancy putting your baking skills to the test while raising money for Crohn’s and Colitis UK? Our new BAKE IT fundraising pack is jam-packed with ideas guaranteed to make your next bake sale a sweet success.

Order yours at crohnsandcolitis.org.uk/ bakeit

IN FULL SWING

Golf event bags more than £2,000 in 14th year

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n annual fundraiser held by Crohn’s and Colitis UK community champion Annie Swanston has raised £2,084 for the charity.

The Hertfordshire golf day was not held in 2016 but returned on 6 October 2017, moving to Radlett Park Golf Club for the first time.

The event had previously

been held at Harpenden Golf Club, where Annie’s late husband, Ian, was a member.

The day proved extremely popular, with 75 guests enjoying an 18-hole round of golf, an evening meal, a raffle and an auction.

Annie started hosting the golf days in 2002, in memory of Ian, who had Ulcerative Colitis.

“Not only do they help

Annie Swanston has raised more than £170,000 for Crohn’s and Colitis UK

keep Ian’s memory alive, these golf days have created a supportive network for those affected by Crohn’s and Colitis,” she says.

The fundraising aficionado also hosted an annual charity ball earlier in February and has organised a ladies’ charity day to be held on

28 April at St Michael’s Manor Hotel in St Albans.

“IBD doesn’t just impact the individual but also the surrounding family and friends,” adds Annie. “These events are great platforms where people can share their experiences to increase public understanding.”

IBD ALSO HAS AN IMPACT ON FAMILY AND FRIENDS

The Crohn’s and Colitis UK stand at Radlett Park Golf Club

TOP OF THE CLASS

ALASTAIR LEVY

Community champion Ellie Pugh adds a school non-uniform day to her list of fundraising activities for Crohn’s and Colitis UK Ellie Pugh, 13, raised £828.68 for Crohn’s and Colitis UK after organising a non-uniform day at St Mary’s Catholic High School, Manchester, on 21 July.

Diagnosed with Crohn’s Disease when she was seven years old, Ellie has raised more than £6,000 for Crohn’s and Colitis UK over the past five years and is one of the charity’s youngest

community ambassadors.

The idea for Ellie’s latest event came from a conversation with her deputy head teacher, who was impressed by Ellie’s commitment to Crohn’s and Colitis UK. “To rally support behind the nonuniform day I

gave a presentation at the school assembly to tell everyone about Crohn’s and Colitis and the work of the charity,” says Ellie.

“It was quite nervewracking but the whole school was really supportive.”

As well as raising funds Ellie believes that

spreading awareness of IBD and the charity’s support is just as valuable, as does her mother Donna, who was diagnosed with Crohn’s Disease in 2014.

Ellie hopes to organise a similar school event for World IBD Day 2018 (19 May) and has some advice for those wanting to do some fundraising of their own.

“Talk to everyone in your community about getting involved in your fundraising, as every little thing helps.”

CONNECT • SPRING 2018 • 31

YOUR VOICE

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READ ALL ABOUT IT

TRY THESE NEW-EDITION PUBLICATIONS TO HELP MAKE LIFE WITH IBD EASIER NEW AMINOSALICYLATES (5-ASAs) This drug treatment sheet provides helpful information about 5-ASA treatment for Crohn’s Disease or Ulcerative Colitis.

UNDERSTANDING IBD A brief introduction to the key points about Inflammatory Bowel Disease for anyone affected, including families and friends.

SMOKING AND IBD If you are a smoker, you may wonder whether this has an effect on your Crohn’s or Colitis. This information sheet explores the evidence for the different effects of smoking on these two conditions. It also suggests ways to help you give up smoking.

MEDICAL TERMS USED IN IBD You are likely to hear and read many new medical terms when

you are diagnosed with Inflammatory Bowel Disease. This information sheet explains some of the terms most often used.

FATIGUE AND IBD Fatigue is a common symptom of Crohn’s and Colitis. This information sheet explains what IBD fatigue is, what may cause it, and possible ways to reduce it.

TRAVEL AND IBD This information sheet answers some of the questions you may have about IBD when thinking about going on a trip.

It includes suggestions for people who have a stoma or have had surgery.

Please note the following publication has been withdrawn: l Staying Well With IBD The information in this publication has been consolidated into the Living With IBD booklet.

MAJOR UPDATE LIVING WITH IBD Living with Crohn’s or Colitis can be challenging. This booklet looks at some of the everyday situations you may face and contains ideas and suggestions on various issues, including how to help friends and family understand, coping with practical matters such as finances, and looking after your emotions.

FOR MORE INFORMATION crohnsandcolitis.org.uk/ publications

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‘Really proud to lend their support’

GOLDEN GIRLS GO FOR GOALS Watford Ladies FC triumph in their beneficiary match for Crohn’s and Colitis UK

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his season, Watford Ladies dedicated 11 home matches to different charities, selecting Crohn’s and Colitis UK for their game against Millwall Lionesses on 12 October, their opening Continental Tyres Cup group match.

Players warmed up in their Crohn’s and Colitis UK T-shirts before taking to the pitch and beating Millwall LFC 1-0 – their first win of the season.

The 317 fans who supported the match made it the highest attendance of the season so far and helped raise £130 for Crohn’s and Colitis UK. “The team were really proud to lend their support to Crohn’s and Colitis UK because it’s a great way to give back to the local community,” says Ed Henderson, Watford

Ladies FC general manager.

“Players from the Watford FC Girls Academy helped out with collection buckets and I think this commitment helped us raise so much.

It was amazing to see everyone getting involved.”

The team – affectionately dubbed the Golden Girls – hope that the beneficiary match will help educate others about IBD. “By their very nature, Crohn’s and Colitis are quite personal conditions and some can find them difficult to talk about openly,” adds Ed. “By placing the spotlight on Crohn’s and Colitis we hope it encourages others to share their experiences.”

FOR MORE INFORMATION To learn more about Watford Ladies FC, visit watford.fawsl.com

IT WAS AMAZING TO SEE EVERYONE GETTING INVOLVED

JUST ASK

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

THE EXPERTS ANSWER YOUR QUESTIONS

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

causing white cells to pass through the wall of the bowel can cause a raised level.

Non-IBD examples include use of non-steroidal antiinflammatory drugs such as ibuprofen or diclofenac, diverticulitis or colorectal cancer. Even swallowing sputum from a chest infection or bronchitis could, in theory, cause a rise in faecal calprotectin.

HEMP IS AT HAND Does eating soft cheese affect IBD symptoms?

Q

Is cannabidiol (CBD oil) safe and could it help my IBD symptoms?

DR HAWTHORNE SAYS

SAY CHEESE

Q

Is it okay to eat soft cheese when on immunosuppressants?

SHUTTERSTOCK

DR SELINGER SAYS

Immunosuppressants reduce the activity of the immune system, which might make it more likely for patients to catch infections. Cheese made from unpasteurised milk may contain bacteria called Listeria monocytogenes, which can be very harmful to patients on immunosuppressants.

It is therefore advised to avoid cheese made from unpasteurised milk. Cheese from pasteurised milk is safe and nearly all cheeses sold in UK supermarkets are therefore safe. It is a good idea to ask whether unpasteurised milk was used when buying soft cheese from farmers’ markets or abroad.

DR HAWTHORNE SAYS

Listeria infection can occur from eating soft cheese, unpasteurised milk, raw vegetables, uncooked meat and smoked seafood. The risk in IBD appears to be higher for those taking antiTNF drugs, but remains rare.

MIXED SIGNALS

Q

My test results showed high faecal calprotectin levels but I don’t have any IBD symptoms. Could high calprotectin be a sign of anything else?

suggest that despite the patient having no symptoms the IBD is still causing inflammation in the gut.

Patients without symptoms but high calprotectin levels are more likely to suffer a flare during the next year, so IBD doctors and nurses look at optimising treatment in this scenario to prevent future flares.

DR HAWTHORNE SAYS

Faecal calprotectin is a sensitive measure of gut inflammation, but is entirely non-specific, so anything

There is evidence of the anti-inflammatory effects of tetrahydrocannabinols (THC) that are contained in cannabidiol, based on animal models and laboratory studies.

CBD oil is administered without tobacco and it is worth noting that it does not have any of the brain effects of cannabis. It can be used as a complementary therapy if patients are keen to try it and it appears safe, but certainly does not have a strong evidence base as yet.

DR SELINGER SAYS

Faecal calprotectin is a chemical in stool samples that allows us to estimate the level of inflammation in the bowel. In patients with no current IBD symptoms a raised calprotectin level is not an immediate cause for concern. It may however

There is no strong evidence base for the use of CBD oil

CONNECT • SPRING 2018 • 33

MY LIFE

‘I DIDN’T WANT OTHERS TO FEEL LIKE I DID IN THE EARLY YEARS’ Shelley Lawes runs an IBD support group and an ostomy group in her community.

She blogs at Stoma in a Teacup and has modelled ostomy underwear for Vanilla Blush My IBD began 12 years ago, but my symptoms weren’t focused on my bowel, apart from constipation. I felt very tired, low, couldn’t sleep well and had aches and pains.

A therapist who thought I had anxiety asked if I had bowel problems, and I said no. Two weeks later I started bleeding from my back passage. Eventually, I was referred for a colonoscopy which showed nothing – but I was given medication.

I ended up with almost constant diarrhoea and felt dreadful. The doctor gave me different forms of the original medication and said “It will sort it” – but it didn’t.

Ulcerative Colitis was confirmed in 2006 but I was given very little explanation.

In 2012 after our first child, Tate, was born, I was very ill.

Bloods showed I was anaemic and deficient in vitamins, with a high liver result for the meds causing issues. A better drug was considered but instead I got another first-line medication.

I requested a referral to St Mark’s Hospital in Harrow.

When Tate was two, and I was pregnant with our daughter Elsa, I wanted to die – which was terrible for my fiancé James. I went to St Mark’s in 2013 and, when azathioprine failed, I was offered biologics (drugs), but 34 • SPRING 2018 • CONNECT

the SecuriCare blog, Coloplast and Colostomy UK, among others. I’ve featured in The Sheerness Times Guardian, The Sun, The Ostomistic Life e-zine and Tidings magazine, and spoken at ostomy events, ostomy company meetings and an art exhibition. I also help Crohn’s and Colitis UK review patient information as part of its Readers Panel.

Shelley Lawes is on the St Mark’s Hospital patient panel

HAVING MY CONDITION AND WISHES TAKEN SERIOUSLY HAS TRANSFORMED MY LIFE I just wanted it over. Surgery was discussed in early 2015 and I was offered a two- or three-stage procedure, but asked for a full removal.

I was really excited after 10 years of suffering. Although it’s a major operation, my incredible surgeon did it through single-incision keyhole, as well as sewing up my rectum and gluing it. Just five weeks later I was back doing roller derby with my friends.

I felt very isolated after my diagnosis and joined an online support group. That was invaluable to me, so

after surgery I took over a support group. I didn’t want others to feel like I did in the early years, so I ensured ‘Making Ostomies Cool’ was welcoming, informative and all-inclusive.

With the encouragement of my stoma nurses I started ‘Sheppey Ostomy Group Support’. I also started an online group, ‘PositiviTea and IBD’. Being part of these groups has been very rewarding.

Writing has been a major outlet for me. My blogs have been published by The Mighty and I’ve written for

There’s a support gap between IBD nurses and stoma nurses, which I help fill as an advocate. I’m on St Mark’s Hospital patient panel and am kept informed about the progress of their patient-led care project. I’m also a patient leader at WEGO Health.

It’s amazing to be able to eat and drink what I want, to have a bath to relax rather than to relieve pain or clean myself. Having my condition and wishes taken seriously, and the support of the team at St Mark’s, has transformed my life. My poor care in the early years, and the lack of information, support and options, make me want to be a voice for others going through similar experiences.

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

JOIN US

• 5km or 10km stroll through sights and gems of the city • Fun-filled event village for all ages • Free T-shirt for every walker (dog bandanas too!)

Let’s WALK IT together and raise vital funds to make a difference to those living with Crohn’s Disease and Ulcerative Colitis!

* Dates may be subject to change

FIND YOUR LOCATION AND DATE* 1

Plymouth

5

Manchester

2

Bristol

6

Edinburgh

3 4

5th May

12th May

Swansea 2nd June

London 9th June

7 8

16th June

6

24th June

7

Newcastle 30th June

5

Birmingham

8

7th July

#walkit

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2

4

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It was such a fun day. It can feel very lonely having this illness so an event my friends and family, young and old can all get involved with meant a lot to me.

TO REGISTER NOW Go to crohnsandcolitis.org.uk/walkit call us on 01727 734485 and get a free t-shirt

W CE E N VI R E S

ABOUT LIVECHAT

FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER

LIVECHAT Got questions about IBD? Speak to the Crohn’s and Colitis UK information team on LiveChat

crohnsandcolitis.org.uk/livechat

Our information team is available for LiveChat from 10am to 2pm Monday, Tuesday, Wednesday and Friday, and from 10am to 1pm Thursday. Information officers can provide general information about a range of subjects, including: l Medication l Symptoms l Tests and diagnosis l Dietary questions l Employment issues l Accessing welfare benefits l Finding support from other people with the condition The LiveChat icon will be visible on the homepage of the website when an information officer is available to chat. If you have any difficulty using LiveChat, please email to let us know at info@crohnsandcolitis.org.uk Please note: users of mobile devices may experience connection problems when minimising the window or switching off the mobile device’s screen. Please bear this in mind if contacting us from a mobile device.

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