Connect Autumn 2015 by Think Publishing

‘I ROWED 5,000KM TO FIND MY SON A CURE’

WAYS TO GET THE BEST IBD CARE

CONNECT Autumn 2015 / No 82 / www.crohnsandcolitis.org.uk

‘MY ROLE IN A DRUG TRIAL MADE ME PROUD’ P 28

BLUES SENSATION LAURENCE JONES ON LIVING WITH CROHN’S

‘MUSIC IS MY HEALER’

Your membership magazine

Our team of trained information officers are available to give clear and balanced information on a wide range of issues relating to IBD.

Call 01727 734470 or email info@crohnsandcolitis.org.uk

WELCOME

‘I ROWED 5,000KM TO FIND MY SON A CURE’

WAYS TO GET THE BEST IBD CARE

CONNECT Autumn 2015 / No 82 / www.crohnsandcolitis.org.uk

Your membership magazine

‘MY ROLE IN A DRUG TRIAL MADE ME PROUD’ P 28

BLUES SENSATION LAURENCE JONES ON LIVING WITH CROHN’S

‘MUSIC IS MY HEALER’

OUR CONTRIBUTORS THIS ISSUE

NAOMI WHITE The fitness instructor shares her zest for life on page 34. “I’m a firm believer everything happens for a reason. Having Crohn’s Disease has made me value life a lot more.”

PAUL STUART; LARA PLATMAN

PENNIE TAYLOR The health journalist meets a remarkable family on page 14. “Living with Crohn’s is challenging for a child, but Fergus Prior’s family is alongside him all the way. They are an inspirational crew.”

DR MILES PARKES The consultant gastroenterologist on the quest for an IBD cure. See page 19. “These are exciting times as we translate scientific advances into better treatments – and ultimately a cure.”

‘BE PROUD OF YOURSELF FOR THE GOOD DAYS’

As the guest editor for the launch issue of our new membership magazine, Ellie Pearce urges anyone with IBD to speak out

was delighted when asked to be the guest editor of Connect, the new magazine for Crohn’s and Colitis UK. I’ve been passionate about raising awareness of Inflammatory Bowel Disease (IBD) since being diagnosed with Ulcerative Colitis. Although I’d had symptoms for more than a year, I’d always been too embarrassed to see my GP. I was eventually diagnosed in A&E in December 2013. After two weeks in hospital I had an emergency subtotal colectomy with ileostomy. It was a shock to go from being diagnosed to having a stoma in a fortnight. There is not enough awareness of IBD among young people. I hope that by speaking out about Colitis I might break down some of the stigma surrounding IBD, so other undiagnosed sufferers won’t feel as embarrassed to talk to their GP as I did. While I am a lot healthier having had surgery, I have continued to have flare-ups in my remaining rectum that have needed steroid treatment. I try, though, to approach each day with a positive attitude, as without my

colectomy I probably wouldn’t be here today. Living with a stoma as a young person has its challenges, but there’s nothing I’ve found I can’t do. If you’ve been newly diagnosed, I’m sure you will find you feel positive and strong some days and upset on others. Don’t beat yourself up for the bad days, but be proud of yourself for the good ones. Throughout Connect you’ll find inspiring stories of people like you and me who have IBD. I particularly admire Fergus Prior, and the achievements of his dad, who has raised £120,000 for funding into IBD research. Earlier this year I had the first of two more operations to make a J-pouch, which will eventually reverse my stoma. I’m recovering and looking forward to the next step in my IBD journey. I wish you well in yours.

Ellie Pearce

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 that 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 • AUTUMN 2015 • 3

DO YOU WANT TO FUNDRAISE FOR US?

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

AUTUMN 2015

CONTENTS CONNECT Please note we have moved. Our new address is: Crohn’s and Colitis UK 45 Grosvenor Road St Albans Hertfordshire AL1 3AW

#CROHNSANDCOLITISUK

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

MY 5,000km RACE TO HELP CURE MY SON

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

14 NOTEBOOK

FEATURES

06 Research awards Six British universities are granted funding 10 Sam Faiers The reality TV star joins Paralympian Ali Jawad on the 15th London Walk

12 University challenge Ellie Pearce, our guest editor and blogger, on how to cope with IBD and tackle higher or further education 14 Rowing for hope James Prior raced 5,000km to help find a cure for his son – and unlocked £1m funding 20 Singing the blues The young musician battling Crohn’s who is lauded by Jools Holland and Robert Cray 24 IBD champions Specialist nurses are essential for managing IBD symptoms. So why aren’t there more of them?

YOUR VOICE 28 The drugs trial A patient expert on the impact of vedolizumab 30 Dispatches On living with IBD 31 Medical Q&A We’re here to help 34 My life Spin instructor Naomi White on staying fit – and positive

RAFFLE FOR RESEARCH. TOP PRIZE £1,000. Please see pack.

Help us to FIND a CURE sooner

CONNECT • AUTUMN 2015 • 5

NOTE BOOK NEWS FROM AROUND THE UK

£430,000 AWARDED TO FUND MEDICAL RESEARCH CROHN’S AND COLITIS UK SUPPORTS PROJECTS INVESTIGATING TREATMENTS FOR INFLAMMATORY BOWEL DISEASE

rohn’s and Colitis UK has backed innovative medical research into treatments for Inflammatory Bowel Disease (IBD) by granting almost half a million pounds to UK universities. The charity’s Medical Research Awards for 2015 has granted £430,000 in funding to six projects that will investigate possible causes of Crohn’s Disease and Ulcerative Colitis (UC). The university-run projects aim to develop new treatments, including cell therapy and a protective probiotic to control inflammation. Helen Terry, the director of policy, research and public affairs at Crohn’s and Colitis UK, said: “The cause for Crohn’s and Colitis is unknown, so these investments into research are critical if we want to improve lives now and ultimately find a cure. 6 • AUTUMN 2015 • CONNECT

“We are delighted we have been able to fund so many innovative projects we hope will prove groundbreaking in learning more about possible causes, and finding new treatments for over 300,000 people in the UK who have IBD.” Crohn’s and Colitis UK has been at the forefront of research on IBD for more than 30 years. Its 2015 awards were made in partnership with the charity forCrohns, which fully funded two of the projects with £70,615 and a donation from the Rick Parfitt Junior Crohn’s Foundation.

A section through the colon, or large bowel

THE WINNING RESEARCH PROJECTS

patients with IBD.” This project was funded by a donation from the Rick Parfitt Junior Crohn’s Foundation.

THE ROLE OF BACTERIA IN IBD A team at the University of East Anglia has been awarded £119,018. Led by Dr Lindsay Hall, it aims to develop a protective probiotic to help control inflammation. Dr Hall said: “At the end of this project we shall be in a position to generate a ‘super-protective’ strain of bifidobacteria and prepare it for test in

CLASSIFYING IBDRELATED BOWEL CANCER l The University of Oxford will be granted £115,500 to find a new way of classifying bowel cancer. The project should help doctors choose the best treatment for IBD patients with bowel cancer. Project leader Dr Leedham said: “Too little is known about the molecular pathways driving cancer formation in IBD.” EXPLORING A SPECIAL TYPE OF WHITE BLOOD CELL l King’s College London has been awarded £114,689 to explore white

WELCOME TO YOUR NEW-LOOK MAGAZINE CROHN’S AND COLITIS UK LAUNCHES CONNECT 35 YEARS AFTER ITS FIRST MEMBERSHIP NEWSLETTER

‘I ROWED ook beyond the FIND MY 5,000KM TO SON A CU RE’ 1 0 striking figure of our cover star, a blues singer causing ‘MY ROLE A DRUG TRIN MADE ME IAL a stir in the music PROUD’ world, and you will notice something BLUES SENSATIO has changed. We LAURENC N JONES O E have relaunched LIVING W N ITH CR OHN’S your membership magazine, giving it a stronger identity and a new name. The first issue of Connect shows just how far Crohn’s and Colitis UK has LAURENCE JONES IS THE FIRST CONNECT COVER STAR come in the 35 years since the charity first published a membership magazine. Founded in 1979 by Robert and Patricia Annetts, whose daughter had been diagnosed with Crohn’s Disease, the charity was originally known as the National Association for Colitis and Crohn’s Disease (NACC). It adopted its present name in 2010. Our first newsletters A WATERSHED MOMENT WITH THE 2010 RELAUNCH informed members of medical developments and news from groups around the UK. Other milestones included the launch of the first Can’t Wait Card in 1987, and membership topping 30,000 in 2000. As we take another step in our journey, we welcome you to Connect. Enjoy.

HOW THE GUT HANDLES BACTERIA l The University of Oxford has been granted £10,000 to investigate whether an abnormal way of tackling bacteria causes Crohn’s. Dr Holm Uhlig said: “The aim is to develop therapies for IBD patients th at do not necessarily function as immunosuppressives, but target bacteria-handling defects.” The project is funded by forCrohns. INVESTIGATING GENE RPS6KA2 l The University of Edinburgh has been awarded £9,926 to research the role of the gene RPS6KA2 in the causes of IBD. “Identification of the genes involved should allow us to design new therapeutic targets to better control IBD,” said research fellow Dr Elaine Nimmo.

GETTY

ANALYSING THE LINK BETWEEN BACTERIA AND FUNGI IN THE GUT l A team at the University of Liverpool has been awarded £60,615 to discover whether fungi play a role in causing IBD. Possible new treatments could suppress the fungi. Professor Chris Probert, who is leading the project at the university, explained: “The results of this programme of work will be a greater understanding of the role of fungi in the cause of Crohn’s Disease.” The project is funded by forCrohns.

Autumn 2015

/ No 82 /

www.croh nsandcol itis.org.uk

Your mem

bership mag

P 28

‘MUSIC IS MY HEALER’

Dr Elaine Nimmo is investigating the gene RPS6KA2

blood cells called Tregs. The aim is to create a new form of cell therapy treatment for IBD. Dr Nick Powell of King’s College said: “Cell therapy is an exciting and novel therapy for Inflammatory Bowel Diseases.”

CONNECT

WAYS TO GET THE BE IBD CARE ST

FOR MORE INFORMATION Please email feedback on Connect to connect@crohnsandcolitis.org.uk

A 1990 ISSUE OF OUR INFORMAL NEWSLETTER CONNECT • AUTUMN 2015 • 7

azine

NOTE BOOK NATIONAL CONFERENCE HIGHLIGHTS IBD ISSUES EXPERTS, CARERS AND PATIENTS SPEAK OUT ABOUT LIVING WITH IBD

n innovative discussion on mindfulness and psychology was part of the line-up at the Crohn’s and Colitis UK National Conference 2015. At the London event, held jointly with the Royal Society of Medicine, Dr Mariyana Schoultz described the impact of mindfulness-based cognitive therapy on Inflammatory Bowel Disease (IBD). An audience of people living with Crohn’s Disease and Ulcerative Colitis, carers and healthcare professionals gathered to hear about developments in treatment. They discussed the impact of diagnosis, as well as the investigation and management of IBD. David Barker, chief executive for Crohn’s and Colitis UK, talked of the charity’s vision for effective IBD care and the standards all patients should expect. Other speakers tackled patient education programmes and the role of the specialist IBD nurse. FOR MORE INFORMATION See the conference presentations at www.crohnsandcolitis.org.uk/ conference2015 8 • AUTUMN 2015 • CONNECT

Tony Dwight, Daz Whitehead and Paul Tindall

THE LAWN WAY ROUND FRIENDS GIVE FUNDRAISING A CUTTING EDGE

trio of Crohn’s and Colitis UK supporters raised more than £5,000 for the charity this summer by riding lawnmowers around the coasts of England, Wales and Scotland. Daz Whitehead, Tony Dwight and Paul Tindall completed the epic 2,200-mile journey in just seven days. “I don’t know what we were

thinking,” said Dwight, “but the important thing is we’ve raised money for charity.” The challenge, which they titled ‘The Lawn Way Round’, started and finished at Tenbury Wells, Worcestershire, and involved travelling 300 miles a day. The adventure was fuelled with drama when the rear axle on Tindall’s mower gave way at 45mph. He escaped with

only bruises. Dwight said: “He went across two lanes of traffic and flipped over. Thankfully, it was a dual carriageway and the road was quiet.” The challenge was supported by petrol lawnmower engine manufacturer Briggs & Stratton, which provided daily engine services. TO DONATE VISIT www.justgiving.com/ TheLawnWayRound

THE SECRETS OF SNACKING SAFELY The guide to food and IBD gives tips on eating healthily

BECOME A MEM

BER TO

RECEIVE SUPP

ORT & INFORMAT

LEARN HOW TO TOP UP YOUR ENERGY LEVELS, SAYS SPECIALIST DIETICIAN LISA MACLEMAN

NG TO A COMM

UNITY

Share experie nces & suppor suppor ted by t each other online, at events health profes sionals & policy health service & through local s & suppor t makers. Help group networ life-changing & best treatm us raise awaren ks which are research to ents. ess and campa increase the ign for better knowledge of causes

JOINING IS EASY

You can becom e a member just want to if you are 16 suppor t the years or over, charity. are a parent or

If you have inter

net access, join

faster online

carer, a health

professional

at www.croh

or if you

nsandcolitis.or g.uk

PERSONAL DETAI

CROHN’S & COLITIS UK SUPPORTING TO MANAGE YOYOU UR CONDITION

FOOD AND IB D

YOUR GUIDE

Please comple Please return te all fields this and use BLOCK AL1 3AW. Contact form along with paymen CAPITALS: t to Crohn’s the membership team on 01727 & Colitis UK, 45 Grosven or Road, St 734465 if you Albans, Herts, have any queries .

Surname

First name

Title

Address

Gender Male/F emale

he key to a healthy balanced diet is to eat the right amount of food for how active you are. While snacking FOOD AND IBD can be part of a healthy diet, it can also lead to The world of food can be exceeding your body’s daunting when you have energy needs. Choosing Inflammatory Bowel snacks when you have Disease (IBD). Inflammatory Bowel With this in mind, we Disease (IBD) can have updated our guide to be challenging, but by food and IBD, to help you planning ahead you can manage your condition – make the right choices. Excess calories can result in weight gain. If you are underweight, this can be a positive change. However, if you are a healthy weight or if you are overweight, you may want to avoid increasing your calorie intake. Maintaining a healthy weight is important for flare-up, these types of general well-being and can snack can help meet improve recovery from increased energy needs, but flare-ups, while limiting the during remission they can risk of infections and other lead to people consuming illnesses. It is common for excess calories. people with IBD to have Some people with IBD weight fluctuations, representing the periods of remission and active disease. Patients can fall into the habit of eating high-fat, high-sugar Choose healthy snacks during snacks such remission. During a as hummus Email

Postcode

Telephone number

Mobile number

Date of birth

Occupation

IT CAN BE HELPFUL TO EAT LITTLE AND OFTEN

SHUTTERSTOCK

ION

Free of charge publications helplines & & guides accred our member ited by health magaz manage your care, for examp ine full of research news professionals, access to suppor t & & features. le with our Can’t member only information Membe offers. Wait Card & through suppor rship will help you to better t groups, online advice & BELO

Ethnic group

and enjoy the culinary world again. Food and IBD: Your Guide includes advice on eating healthily, planning your dietary routine with the help of a food diary, nutritional treatment, and eating after surgery. It also focuses on special situations involving

find certain foods aggravate their symptoms. The main triggers can be fibre and dairy products, so it is best to aim for low-fibre and low-lactose snacks. It is understandable to want to eat less during a flare-up to ease symptoms, but it is also important to eat well. Snacking is often helpful, with small portions more easily tolerated than large meals. It is also common during a flare-up for your appetite to decline. This can be due to the symptoms of a flare-up caused by inflammation and the side-effects of medication. It can be helpful to follow a ‘little and often’

children with IBD and eating while pregnant. So if you have questions about food and IBD, why not reach for our guide? FOR MORE INFORMATION www.crohnsandcolitis.org.uk/ foodandIBD

approach by snacking on foods throughout the day. Some people find it easier during a flare-up to have six or seven light meals or snacks a day. Others will continue to eat three meals a day, complemented with a couple of small snacks It’s important to plan snacks. Aim to eat every two to three hours during the day to improve your energy and protein intake. This should help repair inflamed tissues and maintain your weight, and can improve your response to treatment. FOR MORE INFORMATION Ask your healthcare professional about access to a dietician CONNECT • AUTUMN 2015 • 9

NOTE BOOK

Sam Faiers and Ali Jawad join forces

THE ONLY WAY IS UP

REALITY TV STAR JOINS PARALYMPIAN IN FUNDRAISING WALK

ritish Paralympic powerlifter Ali Jawad teamed up with television personality Sam Faiers during the summer to open The Crohn’s and Colitis UK 15th London Walk. Faiers, a star of The Only Way is Essex, joined Jawad at Victoria

Embankment Gardens as 850 supporters took part in the annual 10km walk to raise awareness of Crohn’s Disease and Ulcerative Colitis. “Many people are aware that Crohn’s and Colitis UK is a charity close to my heart and I’m really happy to be supporting its annual

walk,” said Faiers, who was diagnosed with Crohn’s after leaving the Celebrity Big Brother house in 2014. “It’s a great cause and I hope that the event generates even more awareness and support for those with Inflammatory Bowel Disease. Well done to everyone involved.”

WELFARE CUTS BRING CHANGE

THE UK BUDGET SPEECH IMPACTS ON BENEFITS CLAIMANTS

10 • AUTUMN 2015 • CONNECT

but will receive additional support to help them take steps back to work. ESA provides financial support for people claiming benefits on the grounds of illness or incapacity. When people are assessed as not being fit for work, they are placed in either the ESA support group, for those with significant disability or terminal illness, or in the ESA WRAG, for those with limited capability for work. Claimants of the ESA WRAG receive

£103 per week – £30 more than the JSA. From April 2017, though, new claimants judged fit for work-related activity will get the same as the JSA, currently £73.10 for over 25s or £57.90 for 18 to 24-year-olds. The chancellor announced most working-age benefits would be frozen for four years from April. Personal independence payments and the ESA support group would be excluded. FOR MORE INFORMATION www.crohnsandcolitis.org.uk/support

REX FEATURES

The UK chancellor George Osborne announced highly anticipated welfare cuts during his budget 2015 speech this summer. Claimants of Employment and Support Allowance (ESA) placed within the work-related activity group (WRAG) will be affected by the cuts, made as part of the Welfare Reform and Work Bill. New claimants will receive the same amount of benefit as those claiming Jobseeker’s Allowance (JSA),

NEWS IN BRIEF SURVEY INTO IBD CARE IN WALES People across Wales with Inflammatory Bowel Disease (IBD) have taken part in a Crohn’s and Colitis UK survey to give their views on the care they receive. The survey, designed to help shape the future of IBD care in Wales, revealed that only 60% of patients who took part had a specialist IBD nurse. One fifth of the

447 respondents who completed the online survey said that they were not satisfied with their treatment. The results of the survey were presented by Crohn’s and Colitis UK at the National IBD Audit meeting in Cardiff to an audience of patients, clinicians, nurses and Department of Health and Social Care officials.

GEL TREATMENT IN DEVELOPMENT American researchers are developing a gel that could eventually help treat some patients with IBD. A report in the journal Science Translational Medicine revealed early findings of research into a hydrogel that sticks to ulcers and slowly releases a drug to treat the affected tissue. The study, by Brigham and Women’s Hospital in Boston, used tests on mice and the bowel tissue

of patients. The gel, ascorbyl palmitate, was used to treat inflammation with a corticosteroid. Sudy leader Dr Jeff Karp said: “We’re hopeful this technology will allow patients to take an enema once a week rather than every day, without systemic side-effects or the need to retain the enema, as the gel quickly attaches to ulcers, ultimately improving their quality of life.”

GASTROENTEROLOGY TEAM AWARD Staff from Cardiff and Vale Health Board have been named Gastroenterology Team of the Year at the BMJ Awards 2015. Known as the medical Oscars, the awards showcase the best in British Healthcare. The accolade was awarded for the team’s

work with patients who need intravenous feeding at home. The technique requires the patient to undergo training. The Cardiff and Vale team organised a system of teaching in the patient’s home which would otherwise have been provided in England.

Simon Hamilton, the minister for health, and David Barker of Crohn’s and Colitis UK

NORTHERN IRELAND IBD SERVICES INADEQUATE

CHARITY CHIEF ASKS FOR IMPROVED CARE Hospitals in Northern Ireland are failing to meet the recommended number of specialist nursing staff needed to treat patients with Inflammatory Bowel Disease (IBD). The revelation came during a reception at the Northern Ireland Assembly. Simon Hamilton, minister for health, social services and public safety, and David Barker, chief executive of Crohn’s and Colitis UK, joined patients,

policymakers and clinicians at the reception. Barker said: “I am constantly inspired by the dedication and hard work of healthcare professionals in Northern Ireland responsible for the treatment and care of patients with IBD. “Despite this, the stark reality is services in Northern Ireland are falling short of the minimum standards required for quality care.”

RELATIVES TO HELP IN STUDY PROJECT RECRUITS CLOSE FAMILY MEMBERS Relatives of people with Crohn’s Disease are being recruited by a British project researching the causes of the conditions. The Centre for Genomic and Experimental Medicine at the University of Edinburgh has set up 29 sites across the UK as part of its work with the Canada-based GEM Project. The project is recruiting immediate family members of people with Crohn’s to

study healthy individuals with a higher risk of developing the condition. Participants will be asked to provide blood, urine and stool samples, and complete a questionnaire about their eating habits and other lifestyle factors. The project is being led by Dr Charlie Lees, senior lecturer at the University of Edinburgh. FOR MORE INFORMATION www.gemproject.ca CONNECT • AUTUMN 2015 • 11

INSIGHT

UNIVERSITY CHALLENGE Coping with IBD need not make your time in higher education any less fun than it is for other students, says guest editor Ellie Pearce

MY ILEOSTOMY DIDN’T STOP ME FROM TAKING PART IN UNIVERSITY LIFE 12 • AUTUMN 2015 • CONNECT

After a year of illness, Ellie had a colectomy in 2013

around, choosing privately rented accommodation over university halls of residence and taking things easier than I had in my 2013 freshers’ week. Other than repeating a term, my first year of studies was comparable to many other students’, as my ileostomy didn’t stop me from taking part in university life. I informed the university’s Student Disability Service about my illness and they helped me access support such as extra rest breaks for toilet stops during exams. My tutor and department were supportive and made allowances for me when necessary. Once, I got food poisoning from some dodgy student cooking – a very bad move with an ileostomy – and spent a night in hospital with dehydration, but my

department allowed me to extend my work deadlines for that week. I suffered minor flare-ups throughout first year. My rectum was affected by Colitis and hadn’t been removed, and this sometimes made me feel quite lethargic. I learned to listen to my body and take it easy when my symptoms were flaring up, and opted for a few more nights in. Friends were supportive. Although I didn’t tell many I’d had a stoma, most knew I had undergone major surgery for bowel disease. I never once received a negative reaction and found everyone very helpful, offering to take notes if I missed a lecture and checking up on me to see if I was OK. The hardest part of having Inflammatory Bowel Disease (IBD) at

LARA PLATMAN

’ve just completed my first year at university after a rather tumultuous start. I began university in September 2013, but my studies were abruptly interrupted when I was diagnosed with severe Ulcerative Colitis (UC). Two weeks later, I had an emergency colectomy with ileostomy. I’d been getting progressively sicker for nearly a year, but had been too embarrassed to tell my GP. By the time of my surgery, I weighed around six stone, and was severely anaemic and deficient in several minerals. I spent time in intensive care after the operation and my surgeon advised me to take a year out of university to recover. Determined to return to my course in English language and literature at University College London, I was allowed to restart in September 2014. Moving back to London was something to strive towards, and I wasn’t about to let this illness prevent me from attending the university I’d worked so hard to get into. I did things slightly differently second time

FRESHERS’ CHECKLIST

TIPS FOR MANAGING IBD IF YOU ARE NEW TO COLLEGE OR UNIVERSITY 1 Register with a

university has been fitting in my treatment around my studies. This June I had another operation to make a J-pouch, and I will need one more to connect the pouch later this year. This meant leaving university slightly earlier for summer than other students and I will need to take extra time off at Christmas. Studying with a stoma and IBD can be challenging, but this makes me more motivated to do well. My illness shouldn’t stop me from achieving my goals. Although my course isn’t scientific, having IBD has sparked an interest in medical issues and I’d like to pursue this further.” FOR MORE INFORMATION www.crohnsandcolitis.org.uk/IBDguideforstudents

One year after her operation, Ellie was back studying at University College London

term-time GP, as it will allow you faster access to healthcare in an emergency and to any prescriptions you require. 2 Be responsible for your own prescriptions, as your new GP surgery might have different procedures than you’re used to. If you’re ordering stoma equipment from an online supplier, notify your GP and the supplier of your change of delivery address. 3 Your university GP may refer you to the nearest hospital for checkups. This doesn’t mean the hospital you use while at home will no longer see you. It’s useful to form health contacts near your university so you can get help quickly if problems arise. 4 When you go home for anything other than a short break, re-register with your GP, as you can’t be registered with two surgeries at the same time. 5 Check that catered halls offer food that is suitable for you, or consider self-catering.

6 If you choose

self-catering accommodation and are new to cooking for yourself, make sure you are cooking and preparing food safely. Pay attention to use-by dates and store food correctly. 7 Be selective about which social events you attend. New students often feel a big pressure to fit in, but you don’t have to attend everything to make friends. 8 Speak to your Student Disability Service, which will help you with any practical aspects of your condition and may be able to provide you with financial assistance if necessary. 9 If you’re struggling with work or falling behind due to your illness, don’t keep it to yourself. The sooner you explain to your tutor, the more likely they are to be accommodating and the sooner you can get help. 10 Consider getting involved with your local Crohn’s and Colitis UK support group. It is a great way to meet others who understand your condition.

CONNECT • AUTUMN 2015 • 13

INTERVIEW NAVIGATION

Fergus Prior with his father, James, who unlocked £1m 14 • AUTUMN 2015 • CONNECT

FUNDRAISING

The Toby Wallace finishes its journey in Barbados

THE FATHER WHO ROWED FOR HOPE James Prior was so inspired by his son’s determination to battle Crohn’s Disease he decided to row across the Atlantic. The result? He unlocked £1m to help find a cure WORDS PENNIE TAYLOR PHOTOGRAPHS PAUL STUART

he Prior boys will never forget the day their father, James, announced his plans to raise money for Crohn’s and Colitis UK. “We were on holiday in Italy and he was reading a magazine about sailing when he suddenly told us he was going to row across the Atlantic,” says Archie, the eldest of the four brothers. “I don’t think any of us could quite believe it.” Sitting together in the living room of the family’s west London home, the brothers – Archie (12), Fergus (11),

Max (9) and Henry (8) – laugh as they remember their responses: “No way”, “you’re far too old”, “you must be joking, Dad”. In fact, James Prior was deadly serious. Six months later he was embarking on a hazardous journey that would take him from the Canary Islands to Barbados, rowing almost 5,000km in just over 32 days. The motivation for James’s heroic endeavour was his son Fergus, who has Crohn’s Disease. “He endures daily challenges to deal with his condition, and he is so brilliantly brave about it,” CONNECT • AUTUMN 2015 • 15

Dr Miles Parkes with James and Fiona Prior at the Sanger Institute

16 • AUTUMN 2015 • CONNECT

Fergus, now 11, was diagnosed at five years old

Dr Miles Parkes. the project leader. They realise this is early days, but are cautiously optimistic the project will help find the cure they so crave. The Priors know just how hard it can be to identify Crohn’s. Fergus had been ill for years before they were told what was wrong with him, although looking back Fiona recognises there were early signs. “When he was a baby he used to take himself off to the loo – there was no need for potty training with Ferg,” she says. “Doctors kept telling me it was something called ‘toddler’s diarrhoea’ and that it would pass, but it never got better. Instead, it kept getting worse.” As Fergus grew older, Fiona and James learned to spot the indications that he was becoming unwell. “A pattern started to develop – he would stop eating, his face would take on a greenish tinge, and he would walk on tiptoe holding his tummy complaining

of pain,” says Fiona. “I was forever taking him to hospital, but no-one could tell us what was wrong.” Eventually, an endoscopy confirmed Crohn’s. “I remember doing a quick internet search just after we’d been told it was Crohn’s and getting a fright because the outlook appeared so depressing,” says James. “But the specialist explained it is a chronic condition we could learn to live with. That’s when we made contact with Crohn’s and Colitis UK.” Fergus spent several weeks in hospital, being fed by a nasogastric tube, and the family began to adapt to the reality of living with Crohn’s Disease. “Exhaustion is characteristic of Crohn’s and I used to have to push Ferg about in a pram, even as a six-year-old,” says Fiona. “Flatulence and diarrhoea are part of it too, so starting school was tough. He hated the loos, so he used to walk out to find me. It was very difficult.”

OCEANUS

says James. “I reckon that my efforts are not a patch on his.” James and his wife, Fiona, had never heard of Crohn’s until Fergus’s diagnosis at the age of five. “It was good to finally find out what it was, but a tremendous shock to learn that there was no cure,” says Fiona. “We have wanted to do what we can to help improve things ever since.” And that is just what James has done – to the tune of £1m. The £120,000 he and his crew of volunteers raised following their Atlantic rowing challenge unlocked £1m in funding for research into the illness that has gripped his son’s life. James and Fiona had asked Crohn’s and Colitis UK to help identify a research project dedicated to finding a cure. The couple chose the IBD BioResource, a Cambridgebased project that will collect data from thousands of volunteers willing to participate in research to find the causes of Crohn’s and Colitis. “The money we raised was not a huge amount, but finding out we could use it to generate bigger funds was fantastic,” says James. “It attracted further investment from the Medical Research Council. It was clear this project was about allowing other things to happen – like ripples on water.” Fiona and James visited the Sanger Institute, where the IBD BioResource is soon to be based, to meet consultant gastroenterologist

FUNDRAISING

LEADING THE CHARGE The money raised by James Prior is helping fund research into Inflammatory Bowel Disease, says Dr Miles Parkes

IT WAS A SHOCK TO FIND THERE WAS NO CURE Over time, everyone has learned to accommodate Fergus’s needs. His school gives him access to more private toilet facilities, and allows Fiona to come in and feed her son every two hours with the liquid dietary supplement Modulen when his Crohn’s flares up and he has to go back on nasogastric feeding. “Ferg hates the nasogastric tube being fitted, and a procedure that ought to take a few seconds can take hours,” says Fiona. So far, Fergus has had to go on Modulen feeding four times, for up to nine weeks at a stretch. “We try to time it to happen during the school holidays now,” says James. “We do

everything we can to keep Fergus’s life as normal as possible.” Avoiding the steroids that might limit his growth and pain control that brings other side-effects, Fergus is encouraged to give fatty foods and fizzy drinks a miss. Between flare-ups, Fergus is in discomfort most of the time. “There’s a sort of code language between us,” says Fiona. “Ferg just has to pat his tummy and I know that he’s feeling rough and needs to rest. He curls up on the couch until he feels better.” More than anything, James and Fiona want a cure for Crohn’s and that is why they decided to undertake their family fundraising challenge. “We know there’s a long journey ahead and a cure may not happen in our lifetime, but research is absolutely essential,” says James. “And that takes money.” James and Fiona thought long and hard before deciding on the transAtlantic rowing fundraising

Recent years have seen major advances in understanding the causes of Crohn’s Disease and Ulcerative Colitis. The challenge now is to translate this knowledge into treatments, and use it as a platform to drive towards a cure for Inflammatory Bowel Disease (IBD). This is where the IBD BioResource comes in. A group of consultants and scientists, the UK IBD Genetics Consortium, has led several landmark IBD genetics studies with the support of Crohn’s and Colitis UK, and more than 20,000 patients with IBD who have given DNA samples. Now we understand which genes are involved in IBD, we need to know what they are doing to cause it, and how these effects might be reversed to better treat it. To do this we need to be able to access IBD patients based on their known genetic makeup, so we can ask focused questions. The IBD BioResource, launching this year, will keep a database of 25,000 patients with IBD who have agreed to be contacted for research studies. These studies can be run by any investigator in the UK with a scientifically sound project. They might involve anything from completing a survey to taking part in a trial of a new treatment. Using groups of patients with similar patterns of IBD and genetic make-up helps us interpret the immunological research and treatment response data. Personalised medicine – targeting specific treatments at patients we know are likely to benefit – may then be possible. FOR MORE INFORMATION www.cambridgebioresource.org.uk

CONNECT • AUTUMN 2015 • 17

Fiona and James with Henry, Fergus, Max and Archie

challenge. “I couldn’t climb mountains because I get altitude sickness, and the north and south poles are a bit too cold,” jokes James. “The Atlantic is an extraordinary kind of environment that has a nice synergy with Crohn’s in that it demands mind over matter, and involves a lot of pain and discomfort. So that’s the one we went for.” The Priors called their campaign Crewing for Crohn’s, and as James began the physical training to prepare him for rowing the ocean, Fiona and their sons began spreading the word. A website was developed, and the boys’ schoolmates held bake sales and cookery sessions to raise funds. Fergus’s geography teacher did a sponsored walk to Everest base camp, while James’s colleagues joined in with a rowing machine marathon. Donations began flowing in. Egged on by all the support, James started running the three miles to and from the office where he works 18 • AUTUMN 2015 • CONNECT

WE ADMIRE HIM ENORMOUSLY FOR THE WAY HE MANAGES THINGS as a director of a change management company. He went to the gym at lunchtime to build core strength, stamina and muscle mass, and borrowed a rowing machine and used it every day. “When I was able to row two hours on and two hours off for 24 hours solid, I knew I was probably fit enough,” says James. The challenge began in Gran Canaria on 10 February 2014 when the Toby Wallace, a custom-built 34ft boat, set off. James was one of eight crew led by skipper Simon Chalk, a transocean veteran determined to beat the world record for crossing the Atlantic by rowing boat.

James’s fellow crew members included a publican, two Royal Marines and a businessman. “We had met once for a quick practice session, so we really didn’t know each other before we set off,” says James. “However we had got to know one another pretty well by the time we had finished.” Each crew member was allowed 2kg of kit, comprising a couple of T-shirts and seam-free shorts, and plenty of medical supplies to treat the blisters that come with prolonged rowing. To reduce weight, they sawed their toothbrushes in half and trimmed the packaging for the dried food and nutritional supplies down to a minimum. At any one time, four crew members were rowing in line while the others rested at deck level or in a ballast tube built into the boat’s hull. Everything – eating, drinking, wet-wipe washing, even going to the toilet – happened in public.

FUNDRAISING The triumphant team celebrates

THE 5,000km CHALLENGE THE BOAT l The Toby Wallace, designed to achieve a ‘four-minute mile of ocean rowing’, is one of the lightest, most advanced rowing boats ever built. It weighs less than 200kg and has five ballast tanks to maximise its self-righting ability – comforting for the crew.

OCEANUS

Fergus says he is “100% proud” of his father James

“The whole thing was incredibly unpleasant – very, very brutal,” says James. “It was a psychological as well as a physical challenge. If I ever found myself wondering why on earth I was doing it, I had to give myself a real telling-off. Ferg never complains, so I wasn’t allowed to.” During the crossing, the crew was pelted by flying fish, endured several weeks of baking sun, and encountered waves as high as buildings during a three-day storm. “Capsizing is a real risk,” says James. “At one point we were contacted by a passing Portuguese fishing boat whose captain offered to rescue us. When we declined he thought we were completely crazy.” Back home in London, Fiona and the boys were tracking James’s progress via the internet. They had made a pact that if anyone felt low they would look at the moon and imagine James doing the same. Once-a-week contact was made by satellite phone. “We had a two-minute

call and we had to keep it all upbeat,” says James. “It was just good to know that everyone was OK.” By the time they reached land at Port St Charles, Barbados, on 15 March at 4.27pm local time, James and the Toby Wallace crew had been at sea for 32 days, 22 hours, 31 minutes and 25 seconds. A couple of hours short of the world record, they had nevertheless achieved the secondfastest such crossing ever recorded. “Just to make it across was no mean feat. It felt pretty good,” says James. “But I will never do it again.” Even so, the effect of his efforts – and those of his teammates – will be felt for years to come. The hopes are the IBD BioResource, containing clinical and genetic information from 25,000 patients, will significantly advance understanding about causes and treatments. Dr Miles Parkes is in no doubt how crucial the efforts of Crewing for Crohn’s have been. “Support from Crohn’s and Colitis UK has been critical, using the money raised by James in his heroic efforts to unlock a grant of more than £1m,” he says. For his part, Fergus says he is “100% proud” of his father, adding: “If I was asked to give my advice to someone newly diagnosed with Crohn’s, I’d say ‘don’t worry, it’s not the end of the world – honestly’.”

THE WEIGHT l Each crew member had a 2kg luggage allowance. That is the equivalent of two bags of sugar – or 20 squirrels, as James was told, much to his amusement. The crew streamlined its supplies wherever possible, even sawing their toothbrushes in half and snipping off the corners of food packets. THE HEAT l There was little shelter on the boat, which could leave the crew baking on board. Despite the sweaty conditions, the crew tried to wear T-shirts to avoid sun-stroke. THE CREW l Each rower could be burning up to 1,000 calories an hour – that’s a potential 12,000 calories a day being burnt by each lean, mean rowing machine. THE MENU l The crew’s food intake was carefully assessed to provide 6,500 calories per day, with high-protein powdered food and sugary snacks. Oreos were a favourite. The crew in their open boat

FOR MORE INFORMATION www.crewingforcrohns.org.uk CONNECT • AUTUMN 2015 • 19

MUSIC

‘BEING ON STAGE TAKES AWAY THE PAIN’ He is defying illness to emerge as the most talented blues musician of his generation. Laurence Jones tells Gemma Briggs about living – and touring – with Crohn’s Disease PHOTOGRAPHS PAUL STUART

n the small back room of Putney’s legendary Half Moon pub, a young man clad all in black – Stratocaster in hand – walks on to the stage where The Who, The Rolling Stones and U2 made their names. At his feet, 250 ageing musos have crammed in to watch Laurence Jones play blues guitar with an ardour that is astonishing for a 23-year-old. “Some people see a young person playing the blues and ask, ‘How do you put so much feeling into your music?’” says 20 • AUTUMN 2015 • CONNECT

Jones. “Well, I have written some heavy songs about my illness. I can really play the blues with emotion on the night if I’m not feeling very well. The blues is all about emotions. It’s about slavery, really, and picking cotton in the field, and how music is a healer. Music is my healer.” Jones was 18 when he simultaneously landed his first recording contract and was told he had Crohn’s Disease. “I’d felt ill for six months,” he recalls. “One night I woke up feeling terrible and I

CONNECT • AUTUMN 2015 • 21

MUSIC

Laurence Jones with bass guitarist Roger Inniss

sound check faces such a challenge. That’s until his manager, Golly, pops over to tell him they’ll stay here following the interview for a burger and chips. “Yeah,” he says, laughing. “Maybe I’ll just have some grilled chicken.” Managing his diet while on the road isn’t always so easy. Jones says his health has been poor since returning from work in Spain last April, but with 250 gigs this year alone, taking time out is not an option. “My manager helps me on the road and I’ve got a great team behind me,” he says. “If I go straight backstage and have to lie down for two hours, the band pack away the gear.” He hints, though, that some people outside the band’s immediate circle have been less understanding. “It’s stupid when people who do not

3 TIPS FOR MANAGING NIGHT SHIFTS WITH IBD HELP LIVE YOUR WORKING LIFE TO THE FULL

REST UP Some people with Inflammatory Bowel Disease (IBD) find persistent tiredness makes symptoms worse, so don’t feel under pressure to be up and out when the shift has finished.

EAT WELL Plan what and when you will eat during your shift. Canteens or cafes may not be open during your work hours. Take a packed lunch and suitable snacks to help maintain energy levels while avoiding trigger foods.

22 • AUTUMN 2015 • CONNECT

EMPLOYMENT Your employer could be required to make reasonable adjustments for you at your workplace. Visit www. crohnsand colitis.org.uk for a guide to employment and IBD.

Jones honed his style watching clips of Eric Clapton

Jones has a background in classical guitar

know what Crohn’s is say things like ‘Aw, have you got tummy ache?’ or ‘Why are you eating plain food?’ I used to be a little bit embarrassed talking about it. But a lot of people in music now know about Crohn’s and a lot of people with Crohn’s now know about blues.” Indeed, many of his fans have the condition themselves, and helped raise more than £1,000 for Crohn’s and Colitis UK at the launch of his third album earlier in the year. Jones is adamant the illness should not prevent people from doing the things they love and believes it won’t stop him achieving his goals. “At times it makes me work even more,” he says. “Sometimes I really push myself to get on stage. But when I’m up there it’s such an amazing experience. I get into a different zone: I’m there but not there, so it really does take away the pain.” Jones’s personality transforms when his set at the Half Moon begins. His onstage confidence is unexpected, as is a rich, rock voice, and he breaks into laughter as his guitar jousts against that of the bass

TONY JOE GARDNER

went to the toilet and passed blood maybe 30 times. First thing in the morning I went to the GP who rushed me to hospital. “Crohn’s is something I’d never heard of before. It was a strange feeling when the doctor told me and I was like, ‘Well, give me a tablet.’ He said, ‘You will suffer this for the rest of your life.’ It’s quite a heavy thing.” In the following five years he has toured the UK and Europe, written and recorded three albums – one in the home of swamp blues, Louisiana, in a studio once used by his hero BB King – and in 2014 was named young artist of the year at the British Blues Awards. He has achieved this while trying various treatments, from blood transfusions to injections in his thigh. “It’s very hard to fit in all the appointments around the concerts,” he says. “Two weeks ago they said, ‘You’ve got to come in for a colonoscopy.’ But I had the most important gig of my career at the Royal Albert Hall with Van Morrison.” With 10 tablets to take each day, he is waiting for a new method of keeping his Crohn’s under control. Yet you wouldn’t guess the relaxed, boyish-looking musician sitting in the garden of the Half Moon after a

I DO NOT DRINK, DO DRUGS OR SMOKE. MUSIC IS ALL I DO player Roger Inniss. There is some gurning, too, as he shows the crowd just how skilled he is at playing blues solos. It is easy to see why he has impressed greats such as the American Walter Trout, who he has supported on tour, and who has been a major influence. “Walter was going to die until they found him a liver,” says Jones of his hero’s recent recovery following a transplant operation. “He has taught me a lot. He was on death row and he feels like a new fighting guy. “I look up to some people and I think, ‘You can make a turnaround from it.’ I do not drink or do drugs or smoke. Music is the only thing I do.” The key to Jones’s outstanding ability is his background in classical guitar. He began playing aged eight and went on to pass all grades, studying at Birmingham Music

College. The interest in blues came from his father, who would take him to gigs near their Warwickshire home. Jones taught himself the style by watching clips of Jimi Hendrix, Eric Clapton and Rory Gallagher on YouTube. It would have seemed more likely for a good-looking, talented young songwriter to take a more obvious rock or pop route. And it is unlikely Jones would need a talent show vehicle such as The X Factor to attract the attention of a major label. Yet he seems committed to inheriting Clapton’s crown as best British bluesman. Having recently been confirmed to play at the Carnegie Hall in New York, this is no wild dream. “The Rolling Stones would take blues and make it modern,” he says. “I want to take my blues in a modern way, but still be traditional. Not a lot of people do that these days; they go heavy rock. I like to stay true to the blues; it’s a feeling.” FOR MORE INFORMATION www.laurencejonesmusic.com

WHAT THEY SAY ABOUT LAURENCE JONES “Laurence is a cross between Eric Clapton and Buddy Guy. He is a genius” Walter Trout “Like a young Robin Trower, exciting and full of energy” BBC Radio 2 “It can only be a matter of time before America notices” Sunday Express “A rising star of British blues rock. He might just be a breakthrough player in a rammed genre of guitar music” Guitarist magazine “A fresh talent who’s driving the British blues movement forward at speed” Classic Rock magazine

CONNECT • AUTUMN 2015 • 23

‘I ALWAYS SAY TO MY P

DON’T WAIT NEXT APPOIN IF YOU NEED CONTACT ME Access to a specialist IBD nurse should be a staple part of your care. Just ask Kay Greveson, who is on the front line working hand in hand with her patients WORDS GEMMA BRIGGS

24 • AUTUMN 2015 • CONNECT

t 4pm on a warm, summer’s Friday, some of the staff on the eighth floor of the Royal Free Hospital, London, are wrapping up their week. Meanwhile, Kay Greveson, a specialist IBD nurse, is only just getting round to eating lunch at her desk. Besides running clinics, and giving patients medication and infusions, she operates an email and telephone Inflammatory Bowel Disease (IBD) advice service. It’s no wonder she often misses her lunch

HEALTHCARE

PATIENTS,

FOR YOUR INTMENT. ADVICE, ME’ Kay Greveson is one of the UK’s specialist IBD nurses

break. Kay is key to the personal and highly effective system of providing care and support to patients in Hampstead, north London, who suffer from Crohn’s Disease or Ulcerative Colitis (UC). “I always say to my patients, ‘Do not wait for your next appointment. If you need some advice, contact me,’” she explains. Kay is one of hundreds of experienced nurses across the UK whose knowledge of IBD allows them to offer excellent patientcentred care.

“IBD nurse specialists play a pivotal role in the delivery of high-quality care and improving quality of life for their patients,” said Helen Terry, Crohn’s and Colitis UK’s director of policy, public affairs and research, earlier this year. “It is regrettable, therefore, that 14% of IBD services still provide no IBD nursing for their patients and many others fall short of the recommended minimum level set out in the IBD Standards. “The expertise specialist nurses offer to patients is based

HEALTHCARE

1 MY IBD TEAM

TOP 10 ESSENTIALS FOR GETTING A GOOD IBD SERVICE

I am supported by a team of IBD specialists who help me manage my condition

2 SOMEONE TO CONTACT

Crohn’s and Colitis UK has launched a guide to help you get the best out of your healthcare service. My Crohn’s and Colitis Care outlines how you can work effectively with the people involved in your care. Here are the top 10 essentials for ensuring you get a good IBD service.

on their unique understanding of the way in which IBD impacts on all aspects of life. We cannot emphasise enough the value patients place on this support.” IBD nurses will have at least five years’ experience working in gastroenterology, says Kay. Many of them can prescribe, since a large part of the role is reviewing patients and altering their treatment. “In clinics we often have more

My care is appropriate for me and takes account of my age, goals, preferences and personal values

4 JOINED-UP CARE My care is coordinated between the different health professionals involved

time than doctors,” she says. “Our clinics are 20 minutes, but with a consultant it might be five to 10 minutes, plus that slot is overbooked.” This means a specialist nurse can go into detail about treatment and cover topics that a consultant may not have time to touch on, such as exploring relationship issues. People come in to see me in clinic and say, ‘I did not want to bother the consultant, but ...’.”

I am offered different options for my treatment and care so I can understand and choose what is right for me

6 DECISION MAKING

I know who to contact quickly if I need advice or if my condition changes

3 PERSONALISED CARE

5 INFORMED CHOICES

I am fully involved in all decisions about my care and, if I wish to, am able to include a family member, carer or friend in my decision making

7 A CLEAR PLAN

I work with my IBD team to agree a plan for my care and have regular reviews with a member of the team to monitor my health and well-being

Daniella Freeman, diagnosed with Crohn’s Disease nine years ago, has benefited from the personalised care Kay provides. “Over the years I have had various flare-ups of different levels of severity and some periods of remission,” says Daniella. “I first met Kay soon after I was diagnosed and started going to the Royal Free Hospital. She’s been a key part of my support since then.” An important part of the specialist

VITAL STATISTICS

300,000

37%

1.5

6,472

14%

3,256

IBD nurses should be available per 250,000 people

of IBD services in the UK do not have a specialist nurse

26 • AUTUMN 2015 • CONNECT

of IBD services in the UK have enough IBD nurses for effective cover

calls were taken by IBD nurses during an audited two weeks

had an appointment with an IBD nurse during an audited two weeks

GETTY; SHUTTERSTOCK

people are estimated to be affected by IBD in the UK

HEALTHCARE

8 LIVING WITH IBD

I am given information and offered ongoing support to understand and manage my life with IBD

9 GOING INTO HOSPITAL

My IBD team are informed if I am admitted to hospital

10 IMPROVING YOUR SERVICE

I am asked for feedback on my experience of care and am able to play a role in improving my service

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

Your care should involve a coordinated approach

IBD nurse’s role is in advising on how to take medication. Kay has taught Daniella how to inject Humira – the brand name for adalimumab – and supported her when infliximab, also known as Remicade, Inflectra or Remsima, was administered. “Most importantly,” says Daniella, “she has been there over email to answer questions that come up regarding medication, blood tests, diet, travelling with Crohn’s – especially now with the IBD passport site she has developed – and anything else that is impacting my Crohn’s.” For patients with such queries, the opportunity to speak directly with an experienced nurse is crucial. It has even been shown that the helpline can reduce hospital attendance. “I take 15 to 20 telephone calls a day,” says Kay. “I also offer email advice, maybe another 10 a day. It works for the patients because you don’t need an appointment. People might be chasing blood test results or they might call if they are going abroad or just if they feel unwell. GPs use the advice line as well, as they might not have experienced many patients with IBD.” Specialist nurses can make a significant difference to patients’ lives

by supporting them with employment issues. A report published earlier this year by Lancaster University’s Work Foundation recommended an increase in the number of specialist IBD nurses. It estimated the cost to the British economy of workers suffering from IBD is around £470m each year. Through interviews with employers and employees, it discovered both parties cited specialist nurses as a great source of support in helping patients manage their condition when in work. “The problem with Crohn’s and UC is they are bowel conditions, and people do not normally talk about them,” explains Kay. “They find it embarrassing. One patient told me she does not like going into work when she is ill because of the smell it sometimes leaves in the toilets.

IBD IS A HIDDEN ILLNESS. SOME EMPLOYERS DO NOT UNDERSTAND THE DISEASE

Sometimes she does not make it and has to deal with that. It’s a hidden illness. A large part of our work is supporting people with education and employment. Some employers do not understand the disease.” Her quick lunch finished, Kay turns her attention back to her computer, answering the email questions and telephone queries of patients in her clinic who rely on this wraparound support. “I’ve come to recognise their voices,” says Kay. “It is usually the people who are a bit more unwell who get in touch. It means so much to be able to support and advise them in difficult times.” For patients such as Daniella, care from an IBD nurse has been crucial to their positive experience of treatment. “Kay is key in making me feel well cared for and looked after, as she is always kind, supportive, well informed and fighting for my health,” she says. “The IBD clinic doctors at the Royal Free are outstanding. I feel I get the best possible service I can get and at the time I need it.” Stressing how crucial this support has been, Daniella tells of how Kay and her doctor at the Royal Free were among the first to be emailed about her daughter’s birth. Praise indeed. CONNECT • AUTUMN 2015 • 27

YOUR VOICE OUR MEMBERS GIVE THE VIEW FROM THE FRONTLINE

HOW A DRUG TRIAL CHANGED MY LIFE As a patient expert enrolled in the trial of the drug vedolizumab, Paula Battersby found her life transformed. She speaks to Pennie Taylor

ll her life Paula Battersby had enjoyed good health. As a natural therapist specialising in massage and fitness, she had been running her own business in Canberra, Australia, for more than 20 years when illness struck. Her GP was flummoxed by her symptoms – including severe diarrhoea, weight loss, inflamed lymph nodes, arthritic joints and shaking. In 2005 Paula, then aged 51, was referred to hospital and diagnosed with Crohn’s Disease. “I had never heard of it before,” she says. “It came as a complete shock.” At first Paula took steroids that slowly 28 • AUTUMN 2015 • CONNECT

restored her to strength, but two years later Crohn’s flared up again and this time steroids were ineffective. She proved allergic to the immunosuppressive treatments azathioprine and methotrexate, and was put on a trial for the anti-TNF drug infliximab, which brought some relief. For the next couple of years Paula’s symptoms were controlled. Then in June 2009 they returned, and this time infliximab was no longer a viable treatment. By March 2010, weighing less than 50kg and existing on a liquid diet, Paula was unable to function.

“I couldn’t drive, I had to lie down all the time, I was constantly sleepy and shaking, and reliant on benefits because I could no longer work. Things were desperate.” That is when she was enrolled on the vedolizumab drug trial. “It was a double-blind trial, so I didn’t know whether I was on the treatment or a placebo,” says Paula, who received an intravenous drip once a month. “Two and a half months later, I started getting relief from the Crohn’s symptoms. I can’t tell you how wonderful that was.” Feeling stronger, Paula decided to return home to North Yorkshire

and her family. She sold up in Canberra, said goodbye to the clinical team there, and began attending a specialist clinic at the Royal London Hospital, also taking part in the multicentre vedolizumab trial. Every month for the past five years, Paula has made the journey from her home near Helmsley to London to receive the trial drug by infusion. Then last year, when the National Institute for Health and Care Excellence (NICE) began the appraisal process to determine whether vedolizumab should be recommended for use by the NHS in the treatment of Crohn’s Disease – as it had been for moderate to severe Ulcerative Colitis in

NEED TO KNOW VEDOLIZUMAB WHAT IS IT? l Vedolizumab (trade name Entyvio) is a ‘biological’ drug made from natural sources. It works in a different way to other biological drugs such as infliximab or adalimumab so is a new class of treatment for Inflammatory Bowel Disease (IBD).

Paula Battersby is proud of the role she played in a key drugs trial

I COULDN’T DRIVE. I HAD TO LIE DOWN ALL THE TIME March – Paula was invited to take part as a patient expert. She had been recruited by Crohn’s and Colitis UK. “I wrote a personal statement explaining the difference this drug has made to me, and attended expert meetings where I gave my evidence and sat around the same table as the medical experts examining the research,” she says. “It was fascinating to hear their discussions.” Until July, when NICE

issued final draft guidance recommending vedolizumab as a Crohn’s treatment option under certain conditions, Paula was unsure it would get the go-ahead. “It is relatively expensive and there was detailed debate about aspects of its efficacy,” she says. “But I am pleased it has been passed and proud to have played a part.” Helen Terry, director of policy, public affairs and research at Crohn’s and Colitis UK, says: “We are in favour of anything that adds another treatment option for people living with Crohn’s Disease and Ulcerative Colitis. Vedolizumab has the potential to help some people with Inflammatory

Bowel Disease (IBD) get on with their lives.” Paula, who set up her own fabric business in Yorkshire four years ago, heartily endorses that: “Vedolizumab has been truly life-changing for me.” Professor David Rampton, consultant gastroenterologist at Barts Health NHS Trust, says: “Vedolizumab is a useful advance for some IBD patients, particularly those who have side-effects to anti-TNF treatment, or have lost response to it. It is a helpful option and offers some patients an alternative to surgery, which many people quite reasonably want to avoid. With time, though, patients may lose response to vedolizumab.”

HOW IT WORKS l Anti-TNFs infliximab and adalimumab target a protein called TNF-alpha. Vedolizumab stops the excessive movement of white blood cells to the gut, helping reduce the harmful inflammatory response that contributes to bowel damage in IBD. Data shows vedolizumab can be effective for Ulcerative Colitis and Crohn’s Disease. WHO IS IT FOR? l NICE has recommended vedolizumab for use by the NHS in England and Wales as a possible treatment for adults with moderate to severe Ulcerative Colitis, and for adults with Crohn’s Disease where other treatments including infliximab or adalimumab have proved unsuitable. The Scottish Medicines Consortium has accepted vedolizumab under similar conditions for use within NHS Scotland. The position in Northern Ireland should be confirmed later this year. A specialist must decide whether a patient meets the criteria for the drug.

CONNECT • AUTUMN 2015 • 29

YOUR VOICE

DISPATCHES PUT A BRAVE FACE ON IT

Leanne Downie and Tom Hough

he Crohn’s and Colitis UK community is a powerful force. We want to harness its energy and decorate our office wall with a gallery of inspiring faces ... including yours. That’s why we have launched the campaign Put a Brave Face on It, and all we ask is that you smile for the camera. To get involved, email us a hi-res self-portrait of no more than 10MB.

The image should clearly show your name, age and diagnosis date. Among the stars of our office gallery are Bev Davies and her 17-year-old son, Ben, both diagnosed with Ulcerative Colitis as children. “We are always positive and smiling,” says Bev. Why not join them?

EMAIL YOUR PHOTOGRAPH TO media@crohnsandcolitis.org.uk

YOUTH MEETING A HIT Discussion workshops tackled topics such as ‘the transition period from paediatric to adult care’ and ‘what should a national association do to attract young members?’ The weekend was a great success. It was incredible to be surrounded by so many people making a real difference to the Inflammatory Bowel Disease community. We’re looking forward to the year ahead after taking ideas back to Crohn’s and Colitis UK to help it develop the services it offers young members. Tom Hough, volunteer

STAGS UNITE TO RACE FOR FUNDS

ince 2009, I’ve had Ulcerative Colitis, which affects over 300,000 people in the UK. Although I have bad days, the symptoms are few and far between. Many people suffer more regular flare-ups, though, and their days are a

30 • AUTUMN 2015 • CONNECT

battle. I feel incredibly fortunate for the help I’ve received and wanted to give something back. During a period of remission, rather than have a traditional stag do, I decided to raise funds for Crohn’s and Colitis UK by getting a group of

Bev and Ben join the campaign

friends to cycle coast to coast. Eight of us cycled 170 miles – a great way to spend a stag do. Peter Egerton, presenter, Viking FM FOR MORE INFORMATION www.justgiving.com/ seatoseaforcandc/

LOW RES

PHOTO CREDIT

uring the summer, Leanne Downie and I represented Crohn’s and Colitis UK at the youth group meeting in Finland of the European Federation of Crohn’s and Ulcerative Colitis Associations. The annual event allows young people who volunteer for their national associations to network and share experiences. To encourage the sharing of ideas, the representatives from each country reported on what their national association had done for young members during the last year.

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

THE EXPERTS ANSWER YOUR QUESTIONS

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

HOW HELPFUL IS ALOE VERA?

Q IBD Warriors Brett Morse and Jamie Bowen

WALKING BACK TO HAPPINESS

he Welsh Olympian and British discus champion Brett Morse threw his weight behind the IBD Awareness Walk in Swansea. The sportsman joined fellow IBD Warriors on the walk, organised by the South Wales IBD Patient Panel. The event on 15 August involved 5k and 10k tracks along the Swansea seafront. David Barker, the chief executive of Crohn’s and Colitis UK, was among the walkers. Funds raised for the charity included a collection of £486.94 on the day and online donations.

PHOTO CREDIT

Pete Egerton on the alternative stag do

“I have heard a lot about the benefits of aloe vera. Can this help me, and which is the best form to take as I understand that aloe vera juice can have a laxative effect? Is the gel a better option?” PROF RAMPTON SAYS There has been only one small clinical trial of aloe vera in Inflammatory Bowel Disease (IBD). It involved about 30 patients with Ulcerative Colitis (UC) and was done about 15 years ago. In patients with mildly (but not seriously) active UC, aloe vera gel, taken in a dose of 100ml twice daily for four weeks, seemed to have a slight beneficial effect on symptoms of UC and on microscopic changes in the bowel lining. It was about as effective as mesalazine. Aloe vera gel seemed to be safe in the small numbers of patients treated in this trial, but we can’t be sure it might not have side-effects. There is no information about the safety of using it for more than four weeks. In the published trial, diarrhoea as a result of aloe vera gel was not seen. Not all aloe vera gel preparations are the same, with some containing less aloe vera than the one used in the trial. If patients do consider using aloe vera gel, they are advised to talk about it first with their

Can aloe vera ease the effects of IBD?

hospital specialist and continue with their usual UC treatments.

CAN IBD CAUSE BAD BREATH?

“I was diagnosed with IBD recently and since then have suffered with bad breath. I have been ensuring I clean my teeth and use mouthwash. When I am out, I always chew on mints or gum. None of these has helped, though. Is this anything to do with my IBD?”

DR HAWTHORNE SAYS Bad breath, or halitosis, is not a feature of IBD. It is caused by a particular mix of bacteria in the mouth interacting with foods in the diet to produce chemicals with unpleasant odour. The most common causes are poor oral hygiene, with tooth decay, gum disease, or build-up of bacteria on the rough surface of the tongue.

Have a dental check-up to eliminate these factors. Dry mouth conditions also allow bacteria to proliferate. Smoking often intensifies the problem. Certain foods, such as garlic, are well known to cause bad breath, with the effects lingering more in some people than others. Discharge of pus from infected nasal sinuses, or coughing up infected sputum caused by lung damage can also be causes of bad breath. Blockage of the outflow from the stomach can very rarely lead to fluid sitting in the stomach, which causes foul-smelling belching. Causes can also include drugs – although none used for treatment of IBD – and rapid weight loss using restrictive diets. This can cause breakdown of body fat releasing ketones that are smelled on the breath. FOR MORE INFORMATION Visit bitly.com/nhs-conditions

CONNECT • AUTUMN 2015 • 31

YOUR VOICE

Find your nearest Together Day

TAKE HEED

TRY THESE NEW-EDITION PUBLICATIONS TO HELP MAKE LIFE WITH IBD EASIER TALKING TO MY CHILD ABOUT MY IBD To tell or not to tell? And how? This information sheet looks at why it may or may not be good to talk to your child about your Inflammatory Bowel Disease (IBD), and suggests ways you can go about this.

CALLING ALL VOLUNTEERS FOR CROHN’S AND COLITIS UK Crohn’s and Colitis UK is hosting five events across the UK to update you on the latest in volunteering activity. At the Together Days, we will share the new vision for volunteering in the charity and ask you how we should move forward. It’ll be a chance for you to meet other volunteers in your area so we can build networks, helping us raise awareness across the UK. FOR MORE INFORMATION For more details of dates, locations and how to register visit www.crohnsandcolitis.org.uk/ together-days