COMMUNITY CHAMPIONS SHOW THEIR SUPPORT
RESEARCH SPECIAL
CONNECT Autumn 2016
No 85 / crohnsandcolitis.org.uk
Your membership magazine
CRACKING THE IBD GENETIC CODE P24
T I G N I K R O W OUT D? IB R O F D O O G E IS EXERCIS E TO IK L ’S IT T A H W S U PL TUDY S A IN T R A P E K A T
FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER
Patient voices wanted By sharing your experience of living with IBD, you can help us to drive improvements to services and standards of care for others.
Find out how your voice can make a difference to the future of IBD care.
crohnsandcolitis.org.uk/ patient-involvement
WELCOME
OUR CONTRIBUTORS IN THIS ISSUE
CORINNE REDFERN The award-winning features editor and writer gets the inside story on a research study into exercise and IBD, meeting lead researcher Dr Lindsay Bottoms and two participants.
GEMMA DAY, CLAIRE WOOD
GEMMA BRIGGS The contributing editor of Connect speaks to 11 Health’s Michael Seres about living with Crohn’s Disease, undergoing a bowel transplant and inventing a gadget to help others with IBD.
ANNA MADILL The University of Leeds psychology professor shares her experience of pregnancy with IBD, the joy she felt becoming a mother and the importance of being kind to yourself.
‘INFORMATION IS POWER AND I HAD SO MANY QUESTIONS’ As a biological researcher, guest editor Dr Gill Holdsworth was eager to know the facts after being diagnosed with Ulcerative Colitis
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or the first 40 years of my life, I paid no attention to my digestion – then it was like I started falling to pieces. It took a while to be diagnosed with Ulcerative Colitis (UC). Although I’d heard of it, I never expected to become a patient myself and it was a massive shock. I reached out to Crohn’s and Colitis UK within a few weeks. I was looking for an avenue to get some credible, moderated and realistic information: for me, information is power – and I had so many questions. A couple of years later, the newsletter came with a flyer asking for new trustees. I thought my professional background as a research scientist could bring something a bit different to the charity and it felt like a great chance to give something back. I’ve been a trustee for 18 months now, and try to be an active bridge connecting scientific research with the wider activities of the charity. I chair the Research Strategy and Funding Committee, and am pleased to see so many projects we have funded in this issue.
The money the charity puts into research is extremely important and I’m tremendously proud to be involved. For any patient going through a bad time, it’s important to know that new treatments are being developed and that there’s so much research going on. Becoming a UC patient has made me take things less for granted. I play guitar, and used to gig. After developing UC, I realised I could no longer rely on my gut and felt unable to commit to gigs. I still play for pleasure, but hope that one day I will get back to performing again. I appreciate everything I can do – even walking my dogs, because for a long time, I was too weak to take them out. Sometimes you have to accept when you’re not feeling so good … but you should make the most of it when you do.
Dr Gill Holdsworth
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.
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FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER
DIRECTORY INFORMATION SERVICE Trained information officers provide callers with clear, balanced information on issues relating to Inflammatory Bowel Disease (IBD). Call 0300 222 5700. CROHN’S AND COLITIS SUPPORT A supportive listening service provided by trained volunteers skilled in giving emotional support to anyone who needs a safe place to talk about living with IBD. Call 0121 737 9931. DISABILITY BENEFIT SERVICE Call the Information Service to arrange a telephone appointment with a trained volunteer for help with Disability Living Allowance, Personal Independence Payment or Attendance Allowance. PARENT TO PARENT Talk to another parent who has a child with IBD. Telephone appointments can be made by calling the Information Service. LIVE ONLINE For a trial period, our information team will be available live online from 10am – 1pm on Tuesdays and Wednesdays. See our website or contact the Information Service for more details. MEMBERSHIP
01727 734465 FUNDRAISING
01727 734485
Visit us online for all the latest resources, news and information on IBD
crohnsandcolitis.org.uk
AUTUMN 2016
CONTENTS
#CROHNSANDCOLITISUK
Events, volunteering, fundraising, news ... tell us about what you’ve been up to
CONNECT Our address is: Crohn’s and Colitis UK, 45 Grosvenor Road, St Albans, Hertfordshire AL1 3AW Email enquiries@crohnsandcolitis. org.uk Online www.crohnsandcolitis.org.uk Membership and general enquiries 01727 830038 Connect is the magazine for Crohn’s and Colitis UK. Registered charity: England 1117148 Scotland SC038632 Editor Fiona McKinlay fiona.mckinlay@ thinkpublishing.co.uk Editor for Crohn’s and Colitis UK Natalie Christie Editorial board Juliet Chambers, Dan McLean, Caroline Reed Contributing editor Gemma Briggs Medical editor Dr Philip Smith Editorial assistant Jonathan McIntosh Sub-editors Andrew Littlefield, Kirsty Fortune, Sam Bartlett, Sian Campbell Designer John Pender Published by Think on behalf of Crohn’s and Colitis UK
GEORGE ARCHER, ALASTAIR LEVY, CLAIRE WOOD
Think, Suite 2.3, Red Tree Business Suites, 33 Dalmarnock Road, Glasgow G40 4LA www.thinkpublishing.co.uk ISSN 2059-8408
24 NOTEBOOK
FEATURES
6 Community champions Revealing the people who will be flying the flag for Crohn’s and Colitis UK 8 Research updates How the charity’s funding is improving experts’ understanding of IBD
14 “It’s not like other transplants” After more than 25 surgeries, Michael Seres underwent a bowel transplant 18 Fitness formula A research study looks at the impact of exercise on those with IBD. Lead researcher Dr Lindsay Bottoms and participants Josh Bolton and Elizabeth Mabey explain 23 In the pipeline Dr Barney Hawthorne looks at future treatments of IBD 24 Tailor made A medical research project looks at epigenetics in children living with IBD
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YOUR VOICE 28 In it for the long run Marion Hemsworth completes her 65th race in a marathon year of fundraising 33 Just ask Experts answer your queries 34 My life Psychologist Anna Madill on motherhood and more
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DON’T FORGET TO ORDER YOUR CHRISTMAS CARDS
SEE THE CHRISTMAS CARD BROCHURE INCLUDED INSIDE THIS MAGAZINE
Available at crohnsandcolitis.org.uk/cards or call 01227 811614
CONNECT • AUTUMN 2016 • 5
NOTE BOOK NEWS FROM AROUND THE UK
MEET THE COMMUNITY CHAMPIONS
EVIE ADDLEMAN aged 11, is working with Leeds City Council children’s services to improve guidance for schools who have children with health conditions.
CROHN’S AND COLITIS UK INTRODUCES THE NEWEST AMBASSADORS FLYING ITS FLAG
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upporters do incredible campaigning work across the UK to raise awareness of Inflammatory Bowel Disease (IBD), and raise money that funds research, support lines and much more. In honour of this great work, Crohn’s and Colitis UK is proud to launch a new level of ambassador – the community champion. These people may not be household names, but they represent the charity proudly at public events, in the media and more, and deserve hearty recognition for their contributions. “The new community champions will reflect everyday supporters who are making a huge difference to the charity and the wider IBD community,” says David Barker, chief executive.
“Our close community is our biggest strength and we would not be able to do the work we do without it. There are people doing incredible things every day and launching the community champion programme is our way of recognising that.” Thousands of people spanning the country are supporting Crohn’s and Colitis UK in many ways, from taking on remarkable fundraising challenges and striving to change the stigma surrounding ‘invisible’ disabilities to sharing their stories and volunteering to support the local community. Crohn’s and Colitis UK hopes these first community champions will encourage and inspire others. FOR MORE INFORMATION Find out more about the champions at crohnsandcolitis.org.uk/communitychampions
THEY REFLECT EVERYDAY SUPPORTERS WHO ARE MAKING A HUGE DIFFERENCE 6 • AUTUMN 2016 • CONNECT
SAM CLEASBY runs the popular blog So Bad Ass, about her journey with Ulcerative Colitis and living with a stoma. She is also an advocate for disability rights.
ANGUS McLEAN chairman of the Edinburgh group, fundraiser and all-round super volunteer, Angus champions the charity’s work in Scotland.
KAY GREVESON is a specialist IBD nurse and passionate supporter of the charity. Kay also created the IBD Passport, a travel resource for people affected by IBD.
GET YOUR BELLY OUT Gemma Willingham, Lorna Haymes and Victoria Marie’s campaign has taken social media by storm, raising more than £53,000 and uniting a whole community.
CHARLOTTE GUINEA is passionate about raising awareness of IBD as one of the charity’s media volunteers. She even postponed a holiday to take part in a live television interview.
RAFEEQ MUHAMMED is a consultant paediatric gastroenterologist at Birmingham Children’s Hospital and a member of the charity’s editorial board.
ANNIE SWANSTON supports the charity in memory of her late husband Ian, who had Ulcerative Colitis. She has raised more than £125,000 and is a great advocate of the charity in her community.
SURBJIT JASSI climbing Ben Nevis and abseiling down the Spinnaker Tower are among the fundraising activities Surbjit has braved in support of her sons, who both have IBD.
ELLIE PUGH following her diagnosis of Crohn’s Disease in 2012, Ellie, aged 11, has organised fundraising events in her community, raising more than £5,000.
UNITED FOR COLITIS Jon and Diana McLeish set up a fundraising initiative that netted more than £100,000 through events including a charity dinner at Manchester United Football Club.
STEVEN SHARP has held two fundraising balls and taken part in many other sponsored events. He is passionate and proactive about raising awareness of IBD in Scotland.
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IBD RESEARCHERS AWARDED £478,000 IN THE HOPE OF NEW TREATMENT CROHN’S AND COLITIS UK ANNOUNCES FUNDING FOR SIX INNOVATIVE PROJECTS
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lmost half a Helen Terry, director million pounds of policy, research and has been awarded public affairs, said: “We by Crohn’s and have come a long way Colitis UK to six in our understanding of innovative projects that will Inflammatory Bowel investigate possible causes Diseases, but there is still of Inflammatory Bowel so much we do not know Disease (IBD). It is hoped about these unpredictable, that these research awards lifelong and potentially could pave the way for life-threatening new treatments and conditions. ultimately a cure “These for Crohn’s investments into Disease and research are Ulcerative critical if we Colitis. want to improve Crohn’s and lives now and Helen Terry Colitis UK has been ultimately find a cure. at the forefront of IBD We are delighted that we research for more than 30 have been able to fund so years. The charity grants many innovative projects three kinds of awards: for that we hope will prove medical research, for groundbreaking in learning research into the social and more about possible causes psychological impacts of the and finding new treatments condition, and for research for more than 300,000 into improving health people in the UK who services for people with IBD. currently have IBD.”
THESE INVESTMENTS INTO RESEARCH ARE CRITICAL IF WE WANT TO IMPROVE LIVES NOW AND ULTIMATELY FIND A CURE 8 • AUTUMN 2016 • CONNECT
PROJECTS SET TO RECEIVE FUNDING IN 2016 l King’s College London will receive £88,668 to look at pain management, with the aim of developing a new intervention for IBD abdominal pain that will be compared to existing NHS painmanagement programmes. “If we show that interventions make a difference to IBD pain we will have a strong argument for the NHS to provide this service to people with IBD, and we will be able to train IBD nurses to deliver help for pain as part of their role,” said Professor Christine Norton, professor of nursing.
l The University of Edinburgh will receive £8,000 to investigate the role of damaged mitochondria in causing IBD. “Our current study seeks to investigate the importance of damaged mitochondrial ‘danger signals’ in driving the inflammatory response in IBD,” said Dr Gwo-Tzer Ho, academic gastroenterologist. l The University of Liverpool will receive £49,579 to develop a potential blood test for Ulcerative Colitis patients to predict how well biological drugs will work, helping clinicians make an informed choice about the best biological drug treatment.
GREAT UPTAKE FOR BIORESOURCE STUDY MORE THAN 500 PARTICIPANTS RECRUITED
SHUTTERSTOCK
Researchers hope that a new blood test may enable doctors to diagnose IBD early
“Identification of accurate predictors of response prior to commencing therapy will minimise time spent with active disease and enable the clinician to make an informed decision to commence the treatment to which the patient is most likely to respond,” said Dr Sreedhar Subramanian, consultant gastroenterologist. l Leeds University will receive £116,272 to investigate bowel cancer in IBD. The study will look at the number of people with IBD who develop bowel cancer, the people who are at most risk, and what medications may prevent it. “Identifying optimum surveillance intervals, high-
risk patients and potential chemopreventive agents could help reduce the burden of invasive testing on patients and healthcareorganisation authorities while still providing maximum clinical benefit to patients,” said Dr Venkat Subramanian, clinical associate professor and honorary consultant gastroenterologist. l The University of Edinburgh will receive £100,089 to look at the role of microRNA in IBD, thereby investigating the possibility of a new blood test to diagnose IBD early and predict how the disease may progress. “We hope to develop a blood-based biomarker
that will help diagnose IBD and predict which patients may go on to require potent medical treatments or surgery,” said Professor Jack Satsangi, chair of gastroenterology. l The University of Cambridge will receive £115,701 to research what switches genes on and off. The study will look at epigenetics in paediatric IBD. “Providing robust evidence that epigenetic mechanisms are critical in the development of IBD would open up the real possibility of a whole new approach to treatment,” said Dr Matthias Zilbauer, clinical lecturer in paediatric gastroenterology.
Led by Dr Miles Parkes at Addenbrooke's Hospital in Cambridge, the IBD BioResource study being carried out by the National Institute for Health Research has so far enrolled patients from its pilot hospitals in Cambridge, Nottingham, Newcastle, King’s Lynn and Exeter, with more recruitment across the UK over the coming months. The focus of IBD BioResource is a major new genetic study aiming to identify markers of disease risk, IBD behaviour and treatment response. “We want to say a massive thank you to Crohn's and Colitis UK, and to the whole IBD community, for supporting the project,” said Dr Parkes. “We have been bowled over by the interest and commitment. The IBD BioResource will be a major platform to drive IBD research over the next 10 years and hopefully deliver substantial advances in IBD treatment. We look forward to the ongoing interaction.”
Study leader Dr Miles Parkes CONNECT • AUTUMN 2016 • 9
NOTE BOOK
RESEARCH UPDATES NATALIE CHRISTIE HIGHLIGHTS SOME OF THE CROHN’S AND COLITIS UK-FUNDED PROGRAMMES
THIOPURINE EFFECTIVENESS
Gut inflammation in Crohn’s Disease can cause scar tissue (fibrosis) which can lead to strictures (narrowings) in the small intestine. The resulting blockages are a common cause of requiring surgery. Researchers at Barts and the London School of Medicine studied a chain of microRNA molecules and the way that they interact with a particular genetic pathway within the cell called Wnt. It is already known that activation of the Wnt pathway is a common feature in a number of other diseases, and the researchers have now shown that it is also connected to Crohn’s Disease fibrosis. They think it might be possible to alter the Wnt pathway to prevent or delay this fibrosis, ultimately reducing the associated need for surgery.
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months, though, for this need to become apparent. Researchers from St Thomas’ Hospital in London have discovered that a special blood test four weeks into taking a
GENETIC DIFFERENCES CAN BE AN INDICATOR
thiopurine drug can show which patients should be put on allopurinol. The researchers also found that genetic differences can be an indicator of which patients are more likely to be affected. The team hopes to develop this test further to allow all doctors to predict how patients will respond to thiopurines before they start the drug, allowing treatment to be tailored accordingly.
SLEEP AND IBD People with IBD only have 4.5 hours of sleep each night on average, researchers have found in interviews with healthcare professionals and people with Inflammatory Bowel Disease to find out about sleep problems. This is due to IBD symptoms such as pain, a need to use the toilet more
frequently, to drink more due to dehydration, feeling anxious and side effects from medications. Poor sleep leads to tiredness during the day and stops people doing all the things they want to do. The study, which took place at the University of Bristol, discovered that patients and doctors do not talk about this side of IBD because they feel little
IBD can lead to restless nights
can be done to help it. None of the patients interviewed had tried ‘talking therapies’ aimed at improving sleep. Doctors and patients thought that a specific IBD-orientated talking therapy could be helpful, and the researchers now want to develop a form of talking therapy that will help people with IBD sleep better.
SHUTTERSTOCK, MICROSCAPE/SCIENCE PHOTO LIBRARY
UNDERSTANDING STRICTURES
Thiopurine drugs (such as azathioprine and mercaptopurine) are a very common form of treatment for people with Inflammatory Bowel Disease (IBD) – although reactions can vary due to the way patients process the drug. For those who find the drug is ineffective or causes bad side effects, another drug, allopurinol, may help if taken in tandem. It may take
Expert nurses are a key resource for IBD patients
SPECIALIST IBD NURSES CAMPAIGN MAKES HEADWAY
SHUTTERSTOCK
MORE THAN 1,200 EMAILS SENT AS CROHN’S AND COLITIS UK MEMBERS SUPPORT DRIVE FOR INCREASE IN SPECIALIST NURSES
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lmost 250 hospitals across the UK could review their IBD services after Crohn’s and Colitis UK supporters sent emails to NHS chief executives. An email template has been available on the Crohn’s and Colitis UK website as part of the ‘More IBD Nurses – Better Care’ campaign. It enables supporters to email the chief executive of their local hospital to tell them how important IBD nurses are. Having specialist IBD nurses helps reduce the length of inpatient stay and attendances to A&E and outpatient clinics. Isobel Mason, nurse consultant and IBD nursing development manager at Crohn’s and Colitis UK, said: “The campaign has already had a fantastic impact, with lots of interesting contact from local services. Posts for two IBD nurses and a
THE CAMPAIGN HAS HAD A FANTASTIC IMPACT
dietician have come about as a result of this, and several others have come back to us and we will be working with them at board level. “Everyone involved is really happy with the results. Physically getting more nurses takes time, but this is an incredible start. It really shows the power of e-action.” As well as encouraging hospitals to monitor how their service matches up to the National IBD Standard, the campaign has also thrown the spotlight on the brilliant work already being carried out by the UK’s specialist nurses. “A lot of what nurses do is hidden so this has given them a boost because they have had a lot of positive feedback,” said Isobel. “We know there are nurses really struggling with not a lot of resources so it’s good to be able to give them this feedback. They can now have a conversation with people at a senior level.”
THE MORE IBD Nurses - Better Care campaign was launched in May to coincide with World IBD Day. The email template can be found at crohnsandcolitis.org.uk/get-involved CONNECT • AUTUMN 2016 • 11
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SCOTLAND LEADS THE WAY WITH LAUNCH OF NEW NATIONAL BLUEPRINT Erin Burnham, nine, raised £1,600
TWO YOUNG FUNDRAISERS WIN AWARDS RECOGNITION FOR CONTRIBUTORS
Two young fundraisers who collected money for Crohn’s and Colitis UK have been awarded trophies in memory of Alex Demain, a staff member who sadly died last year. Erin Burnham, a nineyear-old Crohn’s patient from Stoke-on-Trent, received the under-16s award for her efforts in increasing awareness of liquid diets by selling milkshakes at her school, raising £1,600. Emma Lister, 22, from Warlingham whose sister has Ulcerative Colitis, won the 16–29-year-old category for a fundraising swim across the English Channel, which took 17 hours and raised £7,700. FOR MORE INFORMATION crohnsandcolitis.org.uk/news
ACTION PLAN FOR SCOTTISH IBD CARE IS A UK FIRST
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cotland has the highest incidence of IBD in the UK, but its 26,000 patients are set to receive improved health services following the launch by Crohn’s and Colitis UK of a new National Blueprint. The first of its kind in the United Kingdom, the document, called Scotland Leading the Way – A National Blueprint for Inflammatory Bowel Disease in Scotland, sets out the key components of an IBD service. Supported by the Scottish Government and produced by a multistakeholder team, the national blueprint has been sent to the chief executives of health boards across the nation.
Elaine Steven, health and public service development manager (devolved nations) at Crohn’s and Colitis UK, said the hope is that chief executives will pass on the national blueprint to their service managers. “It is about raising IBD as a focus and creating momentum,” she said. “We are trying to give the IBD standards some teeth. It’s not an overnight fix. What we will do now is try to make sure the guidelines are implemented. I do think that going forward there is an opportunity in Scotland to make IBD services better for people.” Two diverse NHS health boards, NHS Highland and NHS Greater Glasgow and Clyde, took part in a three-year study to help
PATIENT TELLS MSPs OF NEED FOR SCOTTISH ACTION KIRSTY GIBSON SPEAKS AT HOLYROOD
Emma Lister’s Channel swim raised £7,700 12 • AUTUMN 2016 • CONNECT
Creating a plan that would deliver improved patient experiences is the goal of the national blueprint. Kirsty Gibson, 26, was diagnosed with Ulcerative
Colitis in 1997 and spoke in support of the document at the Holyrood launch. She told Connect: “I’m delighted to hear that the blueprint is being developed
Campaigner Grace Warnock (centre) with her mother and Iain Gray MSP at the launch
formulate the guidelines, designed to ensure that people living with an IBD in Scotland receive equitable, timely and appropriate care, thereby improving their health and ability to participate in education, work and social life. Dedicated IBD nurses, improved access to psychological support
and that there are plans in place to develop a ‘streamlined’ service and that steps are being taken to not only reduce the stigma of mental health with a chronic physical condition, but to improve the access to mental health services for those people.” Kirsty, a mental health nurse, said she has had
CROHN’S AND COLITIS UK AWARENESS WEEK CAN YOU HELP?
From 1–7 December, Crohn’s and Colitis UK is once again inviting supporters to shout as loudly as they can to raise awareness of IBD. Put the dates in your diary and look out for more details on events, social media campaigns and more nearer the time. FOR MORE INFORMATION crohnsandcolitis.org.uk
and teleconsultations are all part of the plan. A reception sponsored by Clare Adamson, MSP for Motherwell and Wishaw,
was held at the Scottish Parliament to help promote the publication, with 25 MSPs attending. “I was really pleased to
IBD NURSES AND ACCESS TO PSYCHOLOGICAL SUPPORT ARE ALL PART OF THE PLAN very different experiences over in-patient care over the years, particularly the admission process. Before, she would be admitted after hours in A&E, but now her dedicated IBD nurse speaks with her consultant and arranges for her admission. “I know I am being seen by the right people and at the right time,” she said.
sponsor the reception because my constituents living with IBD deserve access to the best possible care and support available,” said Adamson.
VIEW THE NATIONAL BLUEPRINT crohnsandcolitis.org.uk/news/ scotland-leads-the-way-inimproving-inflammatory-boweldisease-services
RETAILER ACTS ON INVISIBLE ILLNESS FIRMS URGED TO FOLLOW ASDA’S LEAD
Asda is to fit invisible illness signs to toilets in more than 400 of its stores. Crohn’s and Colitis UK supporters have sent more than 12,000 emails urging other firms to follow suit.
From left to right: Maureen Watts MSP, Kirsty Gibson and Clare Adamson MSP
FOR MORE INFORMATION crohnsandcolitis.org.uk/news
CONNECT • AUTUMN 2016 • 13
IT’S NOT ‘ LIKE OTHER TRANSPLANT
Few people know bowel transplants are possible, yet they can offer a lifeline, as recipient Michael Seres explains WORDS GEMMA BRIGGS PHOTOGRAPHS ALASTAIR LEVY
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f you knew someone had endured bowel surgery every year for a quarter of a century, you might think the prospect of undergoing a transplant would not scare them. At least, not the way it would do someone who hadn’t endured a lifetime of operations. Yet despite the incredible bravery shown by Crohn’s patient Michael Seres – who was left with just 40cm of bowel after multiple resections – the short walk to theatre for 15 hours of transplant surgery was the most difficult he has ever taken. 14 • AUTUMN 2016 • CONNECT
“I had a two-month wait for a donor – which is relatively short,” says Michael, who was diagnosed with Crohn’s Disease at the age of 12 and underwent his transplant aged 42. “I got the call at 12.01am and I was scared beyond belief. My wife and I drove to the hospital and did not say a word. I went to theatre at 6am. “You are waving goodbye to your loved ones and not knowing if you will ever see them again. The walk to theatre was the scariest walk I’d ever had.”
Bowel transplants are rare: as few as 15 to 20 are carried out in the UK each year, with only four specialist centres offering the treatment. Michael received his surgery at the Churchill Hospital in Oxford, a patient of surgeon Anil Vaidya. As only the 11th person to undergo such treatment since it was introduced at the hospital in the 1980s, he says that half of the previous 10 had “not been very successful”. It was in 2011 that his doctors first raised the prospect of a transplant. “Having had almost a surgery a year for 25 years
SURGERY
TS’ I found myself with short bowel and intestinal failure. I was in hospital for the best part of 18 months. They said that my liver was starting to show signs of degenerating and I had problems that total parenteral nutrition (TPN) can cause. The only solution could be a bowel transplant.” Despite the clear need for further treatment – he was being fed via a peg tube in his stomach, a nasal tube and an IV line – the transplant option was so high risk that Michael travelled to New York’s Mount Sinai Hospital to get
a second opinion. “That reassessment was: ‘You need a transplant.’ They said there was no other solution and that if I waited too much longer I was going to need a bowel and a liver transplant.”
THE WALK TO THEATRE WAS THE SCARIEST WALK I’D EVER HAD
Michael was now firmly in agreement with his UK surgeons that they should proceed, but he also faced a detailed assessment to confirm his suitability before booking the surgery: “You go through psychological training and extensive physical assessment; it’s not like other transplants. Can your heart withstand it? One of the big challenges is not just the physical but the mental challenge; constantly being monitored with almost daily interactions, scopes and scans. You have to be the type of patient that’s CONNECT • AUTUMN 2016 • 15
prepared for that. For me that is the trade-off for the improved quality of life: you are switching one set of problems for another. I had no quality of life; I had tubes all over me and had little time with my family.” During the wait for a donor – with a hospital bag packed “like when you’re pregnant” – Michael says that he almost did not believe it would happen. He spoke to a post-transplant patient in Ireland who he says was very honest about the good and the bad. “I really believe in the power of peer-to-peer,” he says. “I feel privileged that I get to mentor patients and give them advice. It’s really important to me to be able to give back to my team that take care of me, and living my life as best as I can is giving back to them. The vast majority of IBD patients have one surgery. For some of us it’s quite extreme, therefore you get two choices: you either give up and let it take you over, or you get on with life. No matter what, you can get on with things.” It was October 2011 when Michael received his transplant and ileostomy, and he has since faced numerous complications, including two separate cancers – squamous cell carcinomas and lymphoma – associated with the transplant and medication. “Cancer being a possibility was not discussed before the transplant,” he says. “I felt a tiny lump in the back of my neck and
Seres is a ‘patient in residence’ at Stanford University
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then it became 10 lumps. Thankfully it was a treatable cancer. Getting it was almost as big a shock as having to go through a transplant. There have been plenty of times when I’ve gone, ‘really?’ But what can you do?” Despite these setbacks – including eight months of chemotherapy – Michael says he is lucky to have a good quality of life. “I have a positive outlook,” he says. “I do not know what my odds of survival are going forward, but I know they are less than other people. I’m certainly a guinea pig in medical transplant. In a sense it’s just as important for my medical team to do well as it is for me. We really are a team, we WhatsApp and Skype to manage my care and that’s down to their bravery, not mine.”
SURGERY
Seres and his medical team use WhatsApp and Skype to keep in touch
WHAT IS A SMALL BOWEL (INTESTINAL) TRANSPLANT? A complicated and highly specialised operation, it replaces diseased or shortened small bowel with healthy bowel from a donor. It can be an option for people who are being fed by total parenteral nutrition (TPN) via a drip, because their bowel is unable to absorb any nutrients.
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Patients 2 would be considered for surgery if the TPN had been carried out longterm, causing complications such as running out of veins for
the catheter, an infection causing sepsis, or liver disease.
transplanted bowel to the blood vessels and digestive tract.
Once the decision to do the transplant has been made, pre-operative assessments will be carried out and the patient placed on a waiting list for suitable organs.
They will also perform an ileostomy, diverting part of the small bowel through a stoma; this allows the transplant team to monitor the performance of the transplant.
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Surgery takes around eight to 10 hours under general anaesthetic, with the surgeon removing the bowel and connecting the
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Patients will 6 usually spend between four and six weeks in hospital recovering, taking immunosupressants to reduce the risk of the body
rejecting the new organ. Patients will be weaned from TPN to a normal diet and the ileostomy may be reversed.
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Medication and regular check-ups will be needed indefinitely, but current figures show that after five years, 62% of adults and 51% of children are still alive*.
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*SOURCE: NHS CHOICES, CURRENT FIGURES FOR TRANSPLANTS CARRIED OUT IN THE UK BETWEEN JANUARY 1998 AND DECEMBER 2013
Michael Seres’s invention, the Ostom-i Alert Sensor
YOU EITHER GIVE UP AND LET IT TAKE YOU OVER OR YOU GET ON WITH LIFE
Incredibly, Michael has used his post-transplant experiences to invent a device that helps stoma patients. “Living with a stoma can be challenging; you do not sleep well at night because you fear your bag is leaking,” he says. “The doctors want you to record output as it helps if you determine how the bowel is performing, so they give you a plastic jug to measure.” During the long weeks recovering in hospital, Michael realised that if he could be warned when the stoma bag was filling, he could avoid leaks. He bought a pair of Nintendo Wii gloves, which contain flexible sensor strips, and used them to “build a pretty bad hack”. Michael turned his invention into a successful business, with a device that
can work out the volume in the bag and even send the results direct to the patient’s GP. Having achieved regulatory approval, the Ostom-i Alert Sensor has sold well in the USA and, according to Michael, gives patients the ability to better self-manage. He has since been appointed the first ‘patient in residence’ at Stanford University in California. “Patients come up with solutions to help themselves every single day,” he says. “We want to help patients, if they have ideas, to get regulatory approval. If anybody has got any brainwaves … get in touch.” FOR MORE INFORMATION Visit www.11health.com CONNECT • AUTUMN 2016 • 17
Dr Lindsay Bottoms puts Josh and Elizabeth through their paces 18 • AUTUMN 2016 • CONNECT
Equipment used XXXXXXXXX to record data for the study
FITNESS FORMULA After Dr Lindsay Bottoms was diagnosed with Crohn’s Disease, she was worried she’d have to stop exercising – now she is researching its potential benefits WORDS CORINNE REDFERN PHOTOGRAPHS GEMMA DAY
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he skeletons give it away. Positioned carefully in the corner, the two sets of human bones are the only indication that the University of East London’s exercise physiology laboratory is anything other than an extremely high-tech gym. Stacked-up weights rest on a mat next to a computer; a treadmill that you can strap yourself on to if you’re scared of falling off; 3D motion-analysis technology captures your gait and posture. And right in the centre are two ‘cycle ergometers’, or – to the untrained eye – static bikes,
which form the basis of a brand new study into the positive impact of exercise on Crohn’s Disease. “I’ve had Crohn’s since I was 13,” explains the researcher behind the study, Dr Lindsay Bottoms, 36. “But I’ve always been very active too. I took up fencing as a teenager and started competing internationally, plus I play squash and I rock climb. In fact, I always found that travelling abroad for fencing competitions was far more problematic than the action of exercising itself.” But after a severe bout of inflammation in 2012, Lindsay underwent surgery to remove half a metre of her small intestine. CONNECT • AUTUMN 2016 • 19
RESEARCH “I was in the hospital after my operation, and there were all of these leaflets going on about why it was important not to exercise when you have Inflammatory Bowel Disease (IBD). I just thought to myself, ‘this doesn’t make sense’. Three weeks after the operation, I started running again. Sure, I was exhausted, but I’ve always found that once I push through the fatigue the first time, my energy levels begin to increase again. The tough part is forcing yourself over that initial hump.” Despite Lindsay’s hunch that breaking a sweat might not be bad for individuals with IBD, it was another year before the university lecturer in exercise physiology realised that working out could actually be good for the disease. “One of my colleagues had colitis, and was talking about the link between exercise and the immune system,” she explains. “People with IBD have an excess of T helper 1 cells caused by inflammation, but heavy exercise appeared to reduce their quantity – unlike moderate exercise which increased them. I instantly wanted to study this in depth, but I realised that asking people who haven’t worked out for years at a time – if ever – to start running for an hour three times a week wasn’t doable. Everyone’s illness is different and, for some people, the action of running might not be possible, simply because you’re bouncing all over the place. “I started looking around for other forms of exercise which could be easier for study participants to complete, when I came across high intensity interval training (HIIT). This was already being used to treat obesity and diabetes because it produces an anti-inflammatory effect. Together with my consultant, I applied for a research grant – focusing on the impact of HIIT on the immune system of individuals with Crohn’s, specifically – but the proposal was rejected on grounds of feasibility. I was told to reapply and look into whether exercise with IBD was safe, and whether it was realistic for people with IBD to work out regularly. 20 • AUTUMN 2016 • CONNECT
Elizabeth Mabey is using the study to get fit
Finally, on 1 January 2016, we were awarded a grant of £115,000 and given the go-ahead.” Now based at the University of Hertfordshire, Lindsay and her team of three launched the study in April; recruiting 45 potential candidates with mildly active or inactive Crohn’s. “The study runs for 12 weeks at a time, and involves coming to either of our clinics in Stratford or Winchester three times a week and completing 30 minutes of exercise on a fixed bike,” she explains, adding that she chose to focus on cycling because its steady movement is less likely to irritate the digestive system. “We’re working on a rolling basis, and expect the research to take two years in total – so not everyone started on the same day, and we are still looking for more people to get involved. It’s quite a commitment, but if the results are as positive as I hope they will be, then it could have a huge impact on the physical and mental health of thousands of people with Crohn’s across the world.” For Josh Bolton, 28, from London, the study is already proving a success. “I’d been talking to people with IBD on Twitter for a few months and one of the wonderful people I’ve connected with informed me of an upcoming exercise trial that was yet to be advertised,” he recalls. “She told me that the study was taking place, and that along with looking for participants with Crohn’s who had never done any exercise, they were
AT THIS POINT, ANYTHING THAT HELPS IS WORTH THE EFFORT
RESEARCH STUDY: EXERCISE AND IBD Funded by Crohn’s and Colitis UK, this study is looking at whether exercise training is feasible and useful for adults with Crohn’s Disease. Participants are sought who have been diagnosed with Crohn’s, are between the ages of 16 and 65 years old and
Dr Lindsay Bottoms measures Elizabeth’s heart rate
also looking for people who used to work out regularly, but felt unable to these days due to fatigue. That sounded exactly like me, so I contacted my amazing IBD nurse, who did the research and put me forward. Since then, I’ve been going to
could attend exercise sessions at the University of East London or the University of Winchester over a 12-week period. Each will be allocated to one of three groups: high-intensity training, moderate-intensity training and a control group. In all the groups,
Stratford three times a week. It takes about two hours for me to get there, but Crohn’s has taken away my ability to work, so at this point, anything that helps is worth the effort.” As the first person to sign up for the research, Josh feels comfortable with the structure of the study. “There are three different groups, although you never see anyone else taking part when you’re in the lab,” he explains. “There’s a control group, with people who just carry on doing what they’ve been doing – maybe walking around a bit, but that’s probably it. Then there’s a moderate-intensity group, who do half an hour of consistent cycling at a moderate level of resistance. Finally, there’s the high-intensity group, which I’m in. People in that group have to pedal really, really hard for a minute, followed by a minute of cycling at less resistance, followed by another minute of pedalling full throttle. You repeat that routine 10 times, before a brief warm-down. You can’t choose what group you’re put in, but cycling always used to be my favourite sport, so I secretly hoped for this one. Fatigue is one of the main things that annoys me about Crohn’s. While I know I have to wait to see the inflammation markers at the end of the study to find out if there’s been any long-term impact, I already have more energy.” Elizabeth Mabey, 25, agrees. The King’s College London medical student has had Crohn’s
daytime, early morning and evening sessions will be available. Travel costs will be covered up to £10.90 per person per session.
GET INVOLVED Contact Dr Lindsay Bottoms on l.bottoms@herts.ac.uk or call 01707 285685
for four years, and has been involved in the exercise study since July. “I heard about it in a kind of funny way,” she says. “I was sitting in on a Crohn’s clinic as a student, when I heard the consultant asking patients if they’d like to be involved in the study. I kept thinking, ‘I could do that,’ so in the end, I asked him if I was eligible and things progressed from there.” Elizabeth is now in the moderateintensity group – much to her relief. “At the moment I have no active inflammation, but I’m still extremely unfit and I was pretty daunted by the project. But it was such a great opportunity, I decided to go for it anyway. After all, you get one-on-one training, and don’t even have to pay to join the gym.” Applicants have to be doing less than an hour of cardiovascular exercise every week in order to be considered for the study, and differing
Josh Bolton is pleased to have ended up in the high-intensity group
CONNECT • AUTUMN 2016 • 21
RESEARCH
Lindsay gives Elizabeth some pointers
fitness levels are taken into account with ‘baseline’ tests before the research begins. Wearing a breathing mask to track lung capacity, along with a heart-rate monitor, patients are asked to pedal as hard as they can against varying levels of resistance to discover their ‘maximum power’ level. “It gets harder and harder and harder, until, eventually, you just can’t move any more,” explains Elizabeth. “If you’re in the high-intensity group, you pedal at 90% of your maximum power for one minute, followed by another minute at only 15%. In the moderateintensity group, we just stick to 35% of our peak power the whole time.” After four weeks, there’s another fitness test, followed by one more at eight weeks, and a final analysis at the end of the three months. “It’s amazing how quickly your fitness levels improve,” says Josh. “By the time I was four weeks in, I could tell that what had initially taken a lot of effort on my part was becoming a lot easier.” After the baseline test, participants get to ditch the breathing mask – although they continue to wear a heart rate monitor for every session. Stool samples are also taken, and Lindsay conducts finger-prick blood tests on participants at the beginning and end of the trial. “We want to see whether cytokines – the markers of 22 • AUTUMN 2016 • CONNECT
IT’S AMAZING HOW QUICKLY YOUR FITNESS LEVELS IMPROVE inflammation – are increasing or decreasing over the course of the 12 weeks,” she explains. “Ideally, we’ll find that there are fewer of them at the end than there are at the start. That would be a really exciting result.” But the benefits might not be all physical. “Whether you have Crohn’s Disease or Colitis or you’re completely healthy, I think we all know that when we spend extended periods of time not doing anything, our mental health can suffer,” explains Lindsay. “Exercise releases endorphins, which naturally make us feel happier and more positive, and chronic illnesses can be tough to cope with at the best of times. That’s why we’re tracking participants’ moods too. We ask anyone
who takes part to rate their happiness on a numerical scale before and after completing the workout. The hope is that after 12 weeks they’ll have noticed a difference in their moods as well as their fitness levels.” It’s looking positive. “I was diagnosed with Crohn’s halfway through 2013, but I’d had serious problems for a long time before that, and I was very unhappy,” acknowledges Josh. “I was in incredible pain – there was ulceration on top of ulceration in my colon, and I couldn’t eat or drink. My weight dropped to 43kg – at 176cm tall, that’s very low. My energy levels fell, and I had to give up my job because I was too weak. It took about two years to get a diagnosis – and by that point I was struggling to walk. Since then, my physical health has improved, but I’ll still feel down sometimes. This trial is really changing that.” Elizabeth agrees. “I tend to find that if I stay inside and do very little, I can feel quite sorry for myself,” she says. “I’m lucky because my Crohn’s hasn’t been severe for three and a half years now, but I still struggle with feeling tired. I’ve only been doing this study for three weeks so far, but my energy levels are already increasing and I just feel a lot more up for doing things. I just feel happier, I guess.” As Josh vows to continue the exercise regimen at home after the study ends, and Elizabeth says she’d like to try running in the future, ironically the only person whose fitness levels are decreasing over the course of the research is Lindsay. “It’s ridiculous, but these days I’m working so hard, I’m exercising less than ever before,” she says, laughing. “But I figure this is definitely worth it.” IND OUT MORE F www.crohnsandcolitis.org. uk/research/ take-part-in-research
IN THE PIPELINE Dr Barney Hawthorne on the drugs for IBD that are currently being put through their paces
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here is a huge unmet need for new treatments for Crohn’s Disease and Ulcerative
USTEKINUMAB Registration trial, Crohn’s Disease only Ustekinumab is currently licensed for treating psoriasis and psoriatic arthritis. Higher doses are being trialled for Crohn’s Disease. It’s quite slow to work, and involves an injection every eight weeks. The first is intravenous, but the others can be done by the patient at home. It works by blocking the signals that come from the dendritic cells in the gut wall. It’s not gut-specific, which is why it works with psoriasis, of course, but it works on the particular inflammation that you get with Crohn’s Disease.
SHUTTERSTOCK
TOFACITINIB Registration trial, Ulcerative Colitis only Tofacitinib is a JAK kinase inhibitor.
Colitis. This is a very exciting time because there are a lot of drugs that are nearly ready for the marketplace, or well on
The difference with these drugs is that they specifically inhibit the kinase molecules on immune cells; they don’t work anywhere else. It’s a tablet, a small molecule which is given orally. There are trials in Crohn’s, but they’re not yielding as good results as trials in Ulcerative Colitis. I reckon it’ll probably be a year before that drug is available. ETROLIZUMAB Phase 2 trial There is a drug closely related to vedolizumab undergoing trials, and
their way through the trial process. When a new drug is developed, it typically goes through three main clinical trial phases before a final registration trial to secure a licence that will make it available on prescription.
the big difference is that etrolizumab is given subcutaneously, so patients could inject at home. It works on a slightly different target, but it’s exactly the same idea – it stops lymphocytes from migrating back into the gut and is gut-specific. PF-04236921 Phase 2 trial, Crohn’s Disease only There’s a new drug being tested that blocks a signal called IL6, interleukin-6, but it hasn’t got a name yet.
Dr Barney Hawthorne is a consultant gastroenterologist at the University Hospital of Wales, Cardiff
ON THE HORIZON There are probably another eight or so drugs at the phase 2 stage, and there are more on the way. Some are already being used in different conditions. Laquinimod, which is going through trials for Crohn’s, is also being put through trials to treat multiple sclerosis, Huntington’s chorea, renal problems and more. STEM CELL SOLUTIONS? There are some really interesting trials going on around stem cells. The Astic trial involves essentially rebuilding a person’s immune system from copies of their
own stem cells – like wiping the hard drive and rebooting your computer from original software. There is some evidence that it does help a number of patients, but it is a toxic and dangerous treatment, and one patient has died from it. For patients with really severe Crohn’s it might be an option. There is also a big trial going on around mesenchymal stem cells, injecting these from somebody else into fistulas of perianal Crohn’s Disease. This is a really interesting treatment. Because it’s given locally, it doesn’t have the same level of side effects and seems to be very safe.
WANT TO TAKE PART IN A CLINICAL TRIAL? Talk to your doctor, who should be able to advise about opportunities near you. Information on forthcoming clinical trials and research programmes can also be found online: ●● www.ukctg.nihr.ac.uk ●● www.crohnsandcolitis.org.uk/ research/take-part-in-research CONNECT • AUTUMN 2016 • 23
RESEARCH
TAILOR MADE A medical research study examining the possibility that your genes might know where your IBD is heading could help doctors to offer the best treatment programme
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WORDS PENNIE TAYLOR PHOTOGRAPHS GEORGE ARCHER
upert Edgcombe had been a healthy boy all his young life. Then two years ago, when he was nine years old and on holiday in France with his parents, he was struck down with severe stomach aches. “It came out of the blue,” says his mother, Amanda. “We visited three chemists, a local doctor and then a more senior doctor, who suggested stomach ulcers. Rupert was very weak, and ordinary medicine was having no effect. We were in a complete state, not knowing how to help him.” Back home in Yoxford, Suffolk, Rupert’s condition grew worse. “He was bleeding by that stage, and clearly very unwell,” says his father, Chris. “He had to rush to the loo 10 times a day. It was full-on and scary, to say the least.” Overwhelmed by anxiety, Amanda shared her concerns about the severity of Rupert’s condition with the family GP, who acted quickly. “I was as sure as I could be it was not food poisoning or a bug, but something far more serious,” she says. “We were referred straight away to Addenbrooke’s, for which I am so grateful. Some families have to wait years to find out what is going on.” Addenbrooke’s Hospital in Cambridge is a specialist centre for the investigation and treatment of Inflammatory Bowel Disease (IBD) in children, serving the east of England. 24 • AUTUMN 2016 • CONNECT
Dr Matthias Zilbauer is leading the epigenetic research project
Here, Rupert underwent clinical investigations that led to a diagnosis of Ulcerative Colitis. “There had been no precedent in either of our families, as far as we know, so it came as a complete shock,” says Amanda. “As a parent, you start to blame yourself, thinking ‘Is it something I have done? Did I use the wrong cleaning products, could it be because of something in the environment?’ I constantly wonder what the trigger was.” The same questions occupy a growing number of parents with children who are affected by IBD. And researchers based at Addenbrooke’s are on a scientific quest to hunt down the answers.
A two-year research project entitled ‘Epigenetics in Paediatric IBD – Investigating Intestinal Epithelial DNA Methylation and its Role as a Clinical Biomarker’ has just started. Funded by a grant of £115,000 from Crohn’s and Colitis UK, the lead researcher is University of Cambridge lecturer, and honorary consultant in paediatric gastroenterology at Addenbrooke’s, Dr Matthias Zilbauer. “We know that cases of IBD have been rising fast over the past 50 years, and that the incidence is highest in the developed world: in northern Europe, for instance, some reports suggest that numbers have almost doubled,” he says. “In the developing world, IBD is pretty much unheard of. But in
RESEARCH
Rupert, 11, is helping improve IBD care by participating in the study CONNECT • AUTUMN 2016 • 25
RESEARCH countries such as China, Japan and India, which are adopting a western lifestyle, we are starting to see incidence pick up. That would suggest there is something in the way we live that is contributing to the development of these conditions.” The theory is that while human DNA – our fundamental genetic code – has not changed much over the past 50 years, the way individual cell types respond to changes in the environment may cause alterations, and possibly malfunction of cells, leading to disease. In principal, epigenetic mechanisms are able to switch genes on or off, and this may happen in response to environmental factors. “The intestinal epithelium is the inner lining of the gut, and there is lots of evidence to suggest that the function of that cell layer is impaired in people with IBD,” says Matthias. “Our hypothesis is that malfunction of the gut epithelium might be at least in part due to alterations in the epigenetic programming – specifically the DNA methylation profile – possibly caused by changes in our environment. Our aim is to prove that hypothesis, and to see if we can use that information to improve the management and treatment of IBD.” The increase in childhood-onset IBD is particularly marked, and until now it has proved impossible to accurately predict the course of disease progression in individual patients. “Any child diagnosed with IBD can have a range of severity,” says Matthias. “Some are affected relatively mildly, require very little treatment and spend very little time in hospital. For others no treatment works, they have to undergo surgery including gut re-section, spend a lot of time in hospital, fail to thrive and may suffer severe psychological as well as physical consequences. “Right now there’s no way to tell which patient will go which way at the beginning of their journey. We are hoping that by looking at their gut layer and their epigenetic profile, we will be able to identify which 26 • AUTUMN 2016 • CONNECT
Matthias hope s the samples wi ll be revealing
child will fall into which category, to allow us to better target their treatment.” To that end, Matthias and his research team have been collecting blood and tissue samples from young patients who attend the Addenbrooke’s paediatric IBD clinic. The process usually involves endoscopy and
colonoscopy, during which small tissue samples called biopsies are taken from the upper and lower digestive tract via a flexible tube. For children, this painless procedure takes place under general anaesthetic. “Samples are taken for clinical needs first, and then extra ones are taken for research,” says Matthias. “There is no added risk to the patient, only added benefit.” The research samples are immediately processed in a laboratory within the hospital, where the epithelial cells are purified before being analysed using extremely sophisticated epigenetic profiling arrays. This generates information consisting of around half a million epigenetic data points that allows comparison of the epigenetic profile between the gut epithelium of patients with IBDs and diseasefree controls. “The theory is that this will allow us to match a patient’s tissue to a particular type of disease, and help us to predict whether they will
RESEARCH
SAMPLES ARE TAKEN FOR CLINICAL NEEDS FIRST, AND THEN EXTRA ONES ARE TAKEN FOR RESEARCH be affected mildly, moderately or severely,” says Matthias. “That would be a breakthrough.” It takes the efforts of the whole Addenbrooke’s gastroenterology paediatrics team – more than 30 people, including a dedicated research nurse, pathologists, surgeons, anaesthetists, laboratory scientists and data analysts – to gather and process this vital information. “We have all worked hard to collect the samples, but we were waiting for the funding to allow us to do the analysis,” says Matthias. “Thanks to Crohn’s and Colitis UK, we are now ready to roll.”
Matthias is optimistic that, given the modern tools at his team’s disposal, progress will be made in clinical understanding of childhood IBD and in improving ways of targeting treatment. “If we can come up with biomarkers, then we will have made great strides,” he says. “The encouraging thing is, epigenetic changes are potentially reversible. There are new epigenetic drugs being developed, and the more we discover about the complex interplay between the different factors affecting IBD, the better it will be for patients and their families.” That is music to the ears of Chris, Amanda and young Rupert Edgcombe. The family regularly makes the 100-mile round trip from their home to the Cambridge hospital for checkups, and the Addenbrooke’s team is on hand any time they are needed. “When Rupert was first referred there, they asked if we wanted to take part in the research project,” says Amanda. “We were determined to do anything and everything we could to help, so we said ‘yes’. It feels important and useful, and we are very glad to be involved.” Now 11, Rupert has just started secondary school, and for the moment his IBD is under control. “It’s terribly tough for him when there are flareups, and at the best of times he has stomach aches once or twice a day,” says Amanda. “We are all learning to live with IBD, but I do get anxious about what the future might hold for him. I hate not knowing how severe his IBD might be. It makes me feel totally powerless. “I am one of those people who wants answers, and I hope that they will come soon.” Matthias can understand how that feels. Three months ago he became a father for the first time with the birth of a daughter, Angelina. “That has certainly given me a different perspective on my work,” he says. “I now feel even more empathy with the parents of our patients – it is the hardest thing in the world to see your own child suffer. I am more resolved than ever before to do what I can to help.”
TAKING PART IN RESEARCH AND CLINICAL TRIALS Great breakthroughs in IBD treatment and care wouldn’t be possible without a lot of willing volunteers, but getting involved can be a daunting prospect, and you may have many questions. l Where do I start? Your doctor is usually the best person to talk to first. He or she may know of research being carried out and can advise on what would be suitable for you. l What will happen? In a clinical trial, this depends on what phase the treatment is at – rest assured that a lot of work is done in the lab before human trials begin. You may be given a dosage of a new drug or a placebo, and researchers will monitor you carefully for improvements to your condition or any side effects. l How long will the study last? This depends on the trial, and you should be sure to find out all the details before you get involved. l Is it dangerous? While there is some risk in clinical trials, there are very strict scientific guidelines and ethical and legal codes. Clinical trials happen all the time, and horror stories are very rare. If there are any signs that the treatment is unsafe, the research team will stop testing. l How do I know if a trial is right for me? What if I change my mind? Discuss the decision with your doctor, look at the eligibility criteria, and consider the benefits and risks for you personally. Get a second opinion if you are still unsure. You can choose to leave a trial at any point, even if you signed paperwork.
CONNECT • AUTUMN 2016 • 27
YOUR VOICE
OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE
Marion and friends at the Brighton Phoenix 10k
28 • AUTUMN 2016 • CONNECT
IN IT FOR THE LONG RUN Runner Marion Hemsworth discusses the motivation behind her inspiring fundraising challenge, 65 doing 65
SOME PEOPLE THINK I’M COMPLETELY BONKERS
Marion. “At first we thought he was suffering from extreme food poisoning but we had absolutely no idea that it was going to turn out to be something as serious.” Within four weeks Simon had most of his bowel removed.
“IBD is different for everybody. Simon is unique in that he fell dramatically ill so suddenly but I know it can be a slow-burning process for others,” Marion explains. “It took him seven years to complete his degree because
SUSSEXSPORTPHOTOGRAPHY.COM
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n her 65th birthday, Marion Hemsworth set herself a remarkable challenge, to run 65 events in a year – and in August she cleared the final hurdle. “I remember reading about somebody who ran 60 10k runs to mark their 60th year and being so inspired,” Marion says, as she reflects on the beginnings of her gargantuan task. “My rules stipulated that I would run races that were at least 5k, with some very longdistance events thrown in for good measure.” As well as being an inspiring personal goal, the challenge was an ideal opportunity for Marion to raise money for Crohn’s and Colitis UK, which has been close to her heart ever since her son Simon was diagnosed with Crohn’s Disease in 2003. “Simon fell ill when he was 19 after he’d just finished his first year at university,” says
Rutland
Highlights of the year he had to keep taking years included the Jerusalem Half out due to his condition. He’s Marathon, the London still dealing with the Marathon and Crohn’s and consequences of his Crohn’s but he’s living a good life now.” Colitis UK’s WALK IT in London with others from the Brighton Following Simon’s and West Sussex group. diagnosis, Marion got “Each event has been involved with the Brighton and completely different from West Sussex group, which provided information and the next but I’ve met some advice for those affected by amazing people along the way IBD before turning her efforts and learned some fascinating towards fundraising. stories,” says Marion. “The “People can be slightly Trailwalker 100km Gurkha embarrassed to talk openly South Down’s challenge was about it because it’s so definitely the most challenging personal,” says Marion. but it was so fulfilling to “Social media campaigns complete it.” have been fantastic On 13 August, in helping others Marion crossed feel more the final finish comfortable line, bringing discussing their her 65 doing 65 IBD openly.” challenge to an As well as end with 530 working for Run miles covered Festive costumes England, Marion is and £5,000 raised. for the Mo Run Olympic Park 10k heavily involved in “If I can raise coaching and leads awareness and running courses for beginners. funds through challenges like Her decision to take on her 65 this, I’m just glad I can help,” doing 65 challenge was an she says. “What I’ve learned ideal opportunity to merge her from talking to others and my passions – but it wasn’t all fun. own experience with Simon is “The biggest challenge was that you’ve got to stay as when I had a bad cold and had positive as you can and keep to keep going so I didn’t fall looking ahead.” behind. Setting my target at Now that her challenge is 65 meant that I had to run one complete, Marion has her or more per week, so that was sights set firmly on the future. tough,” adds Marion. “Some “The problem with challenges people think I’m completely like this is that when you bonkers. Luckily I have an finish them you can’t help but extremely patient partner, think, what am I gonna do supportive family and very now?” she adds. good friends who’ve run “I’ll continue fundraising events with me or helped me in some way, but don’t expect choose them.” a 66 doing 66.”
330 walkers and cyclists turned out on 1 May to follow the route along the Rutland Water Reservoir
Manchester
Manchester’s Cathedral Gardens welcomed more than 450 walkers on 14 May
WALK IN THE PARK MORE THAN £308,000 RAISED
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housands took to the streets for WALK IT this summer, raising money for Crohn’s and Colitis UK. There were 5km and 10km walks at six locations around the country
Swansea
Swansea Bay hosted 250 walkers on 28 May, including Rebecca Evans AM and Geraint Davies MP
York
Taking place on 12 June, the York WALK IT had more than 280 participants
and 3,250 participants raised more than £308,000. Some 140 volunteers made the walks possible in Rutland, Manchester, York, Swansea, Edinburgh and London, with celebrities and politicians lending their support.
London
TOWIE star Sam Faiers launched the London WALK IT on 4 June, which had more than 1,500 walkers
Edinburgh
Starting from the iconic Calton Hill, the final WALK IT took place in Edinburgh on 9 July
CONNECT • AUTUMN 2016 • 29
YOUR VOICE
OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE
WHAT DO YOU THINK? One year ago, Crohn’s and Colitis UK launched its new membership magazine, Connect. It’s been a good 12 months, with lots of positive feedback and the magazine picking up a handful of awards. We are always keen, though, to keep improving and to make sure the magazine continues to serve its members. 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? Please get in touch. TELL US WHAT YOU THINK Email connect@ crohnsandcolitis.org.uk
30 • AUTUMN 2016 • CONNECT
James and friends at WALK IT London
NAME CHANGER James Conlon grabbed headlines earlier this year with an inventive stunt
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iagnosed with Ulcerative Colitis five years ago, James Conlon “didn’t know much” about the condition. “I was in denial about everything until my symptoms came to a head during a family holiday for my grandad’s 70th birthday,” says James. “Initially I found my IBD quite isolating and, as a result, I stopped socialising as much and fell into a state of depression.” Thanks to support from his family and advice from IBD online forums, James has been focusing on how to best live with the condition and started an online support group to help
others – The Toilet, Me and IBD – which today has more than 1,300 members. “It was inspired by GetYourBellyOut and other online communities,” says James. “Not only is it a supportive space to discuss living with IBD, it’s somewhere to get away from it as well.” Earlier this year, James changed his surname from Conlon to Colon on social media to help raise awareness. The story was
picked up by The Telegraph, The Lad Bible and Metro. “The exposure was incredible and helped me raise £1,500,” laughs James. “I got some really humbling messages from people living with IBD who opened up about their experiences too.” Next year James plans to do a sponsored skydive and feels the prospect of raising money will help him deal with the fear. “The best advice I can give is to put yourself out there,” says James. “Be honest with yourself and always try to be positive, even when times are hard.”
THE EXPOSURE WAS INCREDIBLE AND HELPED ME RAISE £1,500
WHY WE VOLUNTEER In 2015, volunteers held 500 events for Crohn’s and Colitis UK, raised more than £86,000 and supported more than 750 people through parent-to-parent and disability benefits information services, education, awareness and fundraising events, participating in our personal grants panel and much more. For further information on volunteering with Crohn’s and Colitis UK, please get in touch at volunteering@crohnsandcolitis. org.uk or 01727 734472
Caitlin Kane Support line volunteer
Christiane Gungadoo Office volunteer
“For me, the most significant achievement is to know that, just by listening to someone, and showing understanding and empathy, I can help people affected by IBD validate and express their feelings and emotions.”
“After quite a few stays in hospital – I suffered with Ulcerative Colitis for nearly 20 years – I met some volunteers. I thought, after my operations in 2013 and 2014, I would like to do something to contribute to the charity.”
LIVERPOOL FAMILIES HAVE A BALL
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n May, Crohn’s and Colitis UK, with support from the Mersey group and five local hospitals, hosted a family day at Liverpool Football Club. The event brought together more than 200 people diagnosed with IBD and their families. There were presentations by specialist nurses and gastroenterologists, and the chance to ask
Families from across the region attended
Activity-packed day attracts crowds to Anfield
questions in the info hub. It was also a great opportunity for patients and their families to meet people in similar situations and to share their experiences. Attendees could enjoy a tour of Anfield Stadium, and there was face painting and a craft table too. “My family and I thoroughly enjoyed it,” said one attendee.
“The adults enjoyed the presentations by the consultants and it was particularly useful to ask them questions. The children enjoyed the crafts and the tour, and being Liverpool supporters they were made up. My young niece said it was the best day of her life.” This event was made possible through proceeds from the successful United for Colitis event organised at Manchester United’s Old Trafford stadium by Jon and Diana McLeish back in 2014, a contribution from Santander UK, and the hard work of the Mersey volunteer team.
The family day at Anfield Stadium
YOUR VOICE
OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE
TAKE HEED
TRY THESE NEW-EDITION PUBLICATIONS TO HELP MAKE LIFE WITH IBD EASIER CLAIMING PERSONAL INDEPENDENCE PAYMENT A guide for adults with Ulcerative Colitis or Crohn’s Disease. The purpose of this updated guide is to help people aged 16 to 64 with Inflammatory Bowel Disease (IBD) to apply for Personal Independence Payment (PIP). The guide explains who
can qualify for PIP and how the application process works, as well as giving information about what you can do to increase your chance of a successful claim. STEROIDS (corticosteroids) This new information leaflet is designed to answer common questions you may have if you have been prescribed steroids (corticosteroids) to treat your Crohn’s Disease or Ulcerative Colitis (UC), the two main forms of IBD.
INFLIXIMAB This updated information leaflet aims to answer common questions you may have if you have been prescribed infliximab (also known as Remicade) to treat your Crohn’s or Ulcerative Colitis. Please note that the following publications have been withdrawn: • IBD: a guide for general nurses FOR MORE INFORMATION Go to crohnsandcolitis.org.uk/ publications
FILM-MAKER MOEED TELLS HIS STOMA STORY How Moeed Majeed used video diaries to share his experience of IBD and connect with others
T
he night before stoma surgery in December 2015, Mooed Majeed, 25, decided to share his experience on YouTube. “The reaction has been overwhelming,” says Moeed. “As well as thousands of views, I’ve received loads of messages through Facebook and Instagram.” Through his video diaries, Moeed wants to inspire others to talk openly about their experiences, especially as he has had a lot of messages
from people who have kept their Inflammatory Bowel Disease (IBD) hidden from their loved ones. “Keeping your condition to yourself is so isolating. Remember, there are always people there to support you,” says Moeed. “There were times when I was embarrassed talking about my IBD, but sharing my experiences made it easier.” Diagnosed with Crohn’s Disease in February 2011, Moeed struggled to adjust. “Crohn’s forced me to drop
I DECIDED TO PROCEED IN THE MOST POSITIVE WAY I COULD 32 • AUTUMN 2016 • CONNECT
out of university, and I grew distant from friends and became disillusioned with life,” he says. “Thankfully, you start to rebuild and I decided to move forward in the most positive way I could.” Thanks to his stoma, Moeed is living a better life and is focusing on presenting and vlogging full-time.
JUST ASK
THE EXPERTS ANSWER YOUR QUESTIONS
KATIE KEETARUT Dietician at University College London Hospital
Sunshine: the best source of vitamin D
VITAMIN D AND IBD
Q
“There seems to be an increasing amount of research about the role of vitamin D in Inflammatory Bowel Disease (IBD). Is there any evidence of vitamin D supplements improving the symptoms of people with IBD? Can vitamin D supplements help protect people from developing IBD?”
SHUTTERSTOCK
KATIE KEETARUT SAYS
Sunshine is the main source of vitamin D. Even a healthy, well balanced diet providing all the other vitamins and minerals you need is unlikely to provide enough vitamin D. The main dietary sources are oily fish such as salmon, sardines, pilchards, trout, herring as well as cod liver oil, dairy products and
fortified products including margarine and some cereals. Vitamin D deficiency is common in patients with IBD (16–95%), including those recently diagnosed with the disease. Limited data suggests an association between low vitamin D levels and increased disease activity, particularly in Crohn’s Disease. Vitamin D deficiency (< 20ng/mL) has been shown to be associated with increased risk of surgery in Crohn’s and hospitalisations in both Crohn’s and Ulcerative Colitis. A single five-year follow-up study found that vitamin D supplementation was associated with reduced frequency of relapses in patients with Crohn’s. Subjects with lower levels of vitamin D required significantly more
CAUSE AND EFFECT There is growing evidence to suggest a role for vitamin D deficiency in the development of IBD and also its influence on disease severity. The numbers of patients with IBD is higher in countries with a greater prevalence of vitamin D deficiency. In animal studies, deficiency of vitamin D increased the likelihood of developing Ulcerative Colitis, while vitamin D supplementation helped to correct the colitis.
are associated with higher disease severity, suggesting the potential importance of vitamin D in the monitoring and treatment of IBD. However, the question of whether the vitamin D deficiency preceded the severe outcomes in IBD patients, or if poor control of the disease resulted in reduced physical activity and sunlight exposure, leading to low vitamin D levels, is not yet clear. It is highly likely that people with severe IBD will reduce food intake, particularly of vitamin D-rich foods including dairy products, and reduce outdoor activity when unwell, all of which may lead to vitamin D deficiency.
WEIGHING UP THE EVIDENCE Low vitamin D levels are common in IBD patients and
SOME MEDICATION may make you more sensitive to sun exposure so please ask your medical team for advice
medications, hospital admissions and surgery. Additionally, those with low vitamin D levels had worse pain, disease activity scores and quality of life.
CONNECT • AUTUMN 2016 • 33
MY LIFE
‘I’M STILL LEARNING TO ACCEPT THAT BURNING MYSELF OUT ISN’T GOOD FOR ANYONE’ Psychology professor Anna Madill on motherhood, the importance of being kind to yourself and not letting the condition limit your goals I’d experienced symptoms for about five years prior to diagnosis but I never thought much of it. When I was 30 I ended up in hospital following a massive flare-up and was diagnosed with Ulcerative Colitis.
My younger sister was diagnosed with Ulcerative Colitis when she was 25. She has autism, and initially it was difficult for doctors to realise she was at death’s door. It was a shock that, out of three sisters, two of us were diagnosed with Ulcerative Colitis within a year. Luckily I haven’t had to change my lifestyle too radically. My medication has really helped and reinforced the importance of my health. I’m 51 now but adjusting to my condition as a 30-year-old woman certainly brought me down to earth. 34 • AUTUMN 2016 • CONNECT
Anna Madill and her daughter Ailsa
I’VE NEVER LET MY CONDITION HOLD ME BACK OR DEFINE ME AND I THINK THAT’S SOMETHING TO ALWAYS REMEMBER I fell pregnant when I was 38. I was so happy but it was a considerable battle. The first trimester passed smoothly but I had a serious flare-up in my second trimester and was bedridden for six weeks. Going into my third trimester I weighed just over eight stone. I kept telling myself as long as the baby was fine, I was fine. I carried my daughter to full term
and she was born healthy, which I think is such a positive message. I’m a professor of psychology at the University of Leeds with an interest in health psychology. I submitted a successful grant application to Crohn’s and Colitis UK, which now funds PhD student Jihane Ghorayeb and her study on mums with IBD. It will enable women to discuss how they overcame
Statistics show that women with IBD are less likely to have children than those without it. However, with appropriate medical support, women with IBD can approach motherhood safely – as in my experience. The best advice I can give to those living with IBD is to be kind to yourself. With the hectic pace of modern life it can be challenging finding time for rest. I’m still learning to listen to my body and accept that burning myself out isn’t good for anyone. Having my daughter was the biggest delight of my life and becoming a fully-fledged professor is a dream come true. I’ve never let my condition hold me back or define me and I think that’s something to always remember. LIVING WITH IBD See our videos at crohnsandcolitis. org.uk/IBDliving
CLAIRE WOOD
Crawling into the hospital in pain was quite a traumatic way to receive my diagnosis. I wasn’t a very good patient and against medical opinion I discharged myself on Christmas Eve to go home to my parents.
the challenges of their IBD during pregnancy and will yield information to help others make decisions appropriate to their circumstances.
GET INVOLVED WITH YOUR LOCAL GROUP
Volunteer with your local group to raise awareness in your area. Groups 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
RAFFLE FOR RESEARCH
Help us take another step closer to a cure. Your support has already contributed towards vital IBD research – including the study in which 11-year-old Rupert is participating. But we haven’t won the fight yet. By entering our Raffle for Research, you can help. All proceeds go direct to funding research, and you could win £1,000. Enter now at
crohnsandcolitis.org.uk/raffle or return your paper tickets. For any raffle queries call 0370 058 5956
We are licensed by the Gambling Commission www.gamblingcommission.gov.uk Promoter: D Barker, Crohn’s and Colitis UK, 45 Grosvenor Road, St Albans AL1 3AW For information and/or help with problem gambling please call GamCare on 0808 8020 133 or visit www.gamcare.org.uk
IN 0 W 00 , £1
FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER