Connect summer 2016

THE CAMPAIGN TAKING SOCIAL MEDIA BY STORM

TOP TIPS FOR STRESS-FREE HOLIDAYS

CONNECT Summer 2016 / No 84 / www.crohnsandcolitis.org.uk

HOW TO COPE WITH ASSOCIATED CONDITIONS P 26

S I H T WALK WAY!

TEERS N U L O V E H T T E E M AT UNITING TO COMB IBD THIS SUMMER

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

WELCOME

OUR CONTRIBUTORS IN THIS ISSUE

PENNIE TAYLOR The journalist and health communications specialist talks to Kirsty Gibson and Thea Tsamplakos about dealing with a secondary condition on top of IBD. See page 26.

MIKE WILKINSON

GEMMA BRIGGS The contributing editor of Connect and motorsport fan talks to Crohn’s and Colitis UK ambassador Rick Parfitt Jr on page 22 about how Crohn’s Disease affects his life as a GT3 racing driver and rock star.

EUAN RYAN The outdoor adventure filmmaker shares his experience of life with Crohn’s Disease, how he manages his symptoms and his determination to maintain a positive outlook. Turn to page 34.

‘IT’S NOT JUST FUNDRAISING, IT’S AWARENESS RAISING’ Chairman of the Edinburgh Crohn’s and Colitis UK group and chartered accountant Angus McLean hopes people have the courage to speak out

W

alk It is coming to Scotland this year for the first time, and I am looking forward to helping out on the day – probably dressed up as Roary the Lion, our Scottish mascot – with the Edinburgh group.

In this issue, you can find out why some of our volunteers are taking part. Jonathan Benson’s story particularly resonates with me, because prior to being diagnosed with Ulcerative Colitis in 2006, I was a very keen runner. I was fortunate enough to get my symptoms under control in 2008, and started running again. I have completed 14 marathons since. Like Jonathan, I think looking after my fitness and health is keeping my symptoms at bay, although I know not everyone has the same experience.

I have been involved with Crohn’s and Colitis UK since 2008 and fulfil a number of roles including groups treasurer. It’s great that I can use my professional background in finance to support the charity.

What we do in the Edinburgh group and across the country is not just fundraising, it’s awareness raising as well. A recent campaign by ten-year-old Grace Warnock highlighted the need for accessible bathroom signage recognising invisible conditions, because none of us looks unwell on the outside. It’s great to have stories like that of charity ambassador Rick Parfitt Jr in the magazine, and I hope that he might give others the confidence to talk about their condition.

There’s a real spirit of community in Crohn’s and Colitis UK’s network. What we really benefit from is mutual support and understanding. It’s difficult to explain how you’re feeling and the impact it has on your life to someone who’s never experienced IBD. If you’re not already actively involved, I can’t recommend it strongly enough.

Angus McLean

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

CONNECT • SUMMER 2016 • 3

FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER

Research matters

For more than 30 years, Crohn’s and Colitis UK has been leading the drive to better understand the causes of, and find the best treatments for, Crohn’s Disease and Ulcerative Colitis.

Discover the latest projects we have supported, and how you can take part in research or apply for 2017 funding.

crohnsandcolitis.org.uk/ research

SUMMER 2016

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

#CROHNSANDCOLITISUK

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

I SOMETIMES THINK ‘IT’S NOT FAIR, IT’S NOT RIGHT’

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 Deputy Editor Fiona McKinlay fiona.mckinlay@ thinkpublishing.co.uk Editor for Crohn’s and Colitis UK Natalie Christie Contributing editor Gemma Briggs Medical editor Dr Philip Smith Sub-editors Sam Bartlett, Sian Campbell, Kirsty Fortune Design John Pender Published by Think on behalf of Crohn’s and Colitis UK Think, Suite 2.3, Red Tree Business Suites, 33 Dalmarnock Road, Glasgow G40 4LA www.thinkpublishing.co.uk

JEREMY SUTTON-HIBBERT, PAUL STUART

ISSN 2059-8408

26 NOTEBOOK

FEATURES

8 IBD Nursing Campaign Crohn’s and Colitis UK plans to highlight lack of specialist support 12 Going viral The women behind the #getyourbellyout campaign talk about its success

14 Walk this way Four volunteers talk about the inspiration behind their participation in the WALK IT fundraiser 18 Sun seekers Jessica Weatherby shares her experience and advice on holidaying with IBD 22 Rocking in a hard place Racing driver, musician and son of a rock star, Rick Parfitt Jr on his unrelenting drive 26 It’s complicated Living with associated conditions to IBD and the added health risks they can pose

18

YOUR VOICE 30 Do us a favour A wedding donation and more of your stories from across the country 33 Just ask Experts answer your queries 34 My life Outdoor adventure filmmaker Euan Ryan

22

MEMBERSHIP COMPETITION WIN A £50 M&S VOUCHER

OFFER CLOSES 31 JULY. GO ONLINE FOR TERMS AND CONDITIONS

Verify your contact details at www.crohnsandcolitis.org.uk/win

CONNECT • SUMMER 2016 • 5

NOTE BOOK NEWS FROM AROUND THE UK

NEED FOR MORE IBD NURSES RAISED CROHN’S AND COLITIS UK LAUNCHES CAMPAIGN HIGHLIGHTING LACK OF SUPPORT FOR PATIENTS ON WORLD IBD DAY

The Crohn’s and Colitis UK team raises money for World IBD Day by going purple and, left, specialist nurse Isobel Mason talks to a patient

O

ne in three patients with Inflammatory Bowel Disease (IBD) does not have access to a specialist nurse, but the IBD Nursing Campaign launched by Crohn’s and Colitis UK on World IBD Day on 19 May is aiming to change this.

IBD nurses are crucial to improving the quality of life for patients, yet six out of 10 IBD services in hospitals

do not currently meet the recommended standard for the number of specialist nurses necessary to deliver the right level of service and support.

A unique email template on the Crohn’s and Colitis UK website enables patients, their family and friends to email the chief executive of their local hospital with a personalised message and tell them how important specialist IBD nurses are.

Isobel Mason, nurse consultant and IBD nursing development manager at Crohn’s and Colitis UK, is leading the campaign. She highlighted evidence that shows that IBD nurses help reduce the length of inpatient stay and attendances to A&E and outpatient clinics, as well as improving standards of care.

“It seems inconceivable these roles need justifying when there is so much

evidence of the contribution specialist nurses bring to patient care,” she said.

“More than 100,000 people are not being offered the health support they deserve or is recommended, and many more are struggling to be seen by a service that is under pressure.

“A return to the dark days when one in four specialist nurses was threatened by redundancy and almost half were asked

SPECIALIST IBD NURSES, THE FACTS: THERE ARE CURRENTLY

240

specialist nurses working in the UK

6 • SUMMER 2016 • CONNECT

14%

of hospitals have no IBD nurse at all

100,000 patients in the UK with IBD do not have access to adequate care

COMMONS DEBATES CROHN’S AND COLITIS CONTRIBUTIONS HEARD FROM ACROSS POLITICAL PARTIES

to work outside their specialty in a more generic role would be a disaster for everyone affected by chronic conditions. More nurses means better care.”

IT SEEMS INCONCEIVABLE THAT THESE ROLES NEED JUSTIFYING

The campaign will see the charity working with gastroenterologists and IBD nurses to provide new resources that can facilitate job and business planning for health service development. It is also asking hospital chiefs and IBD teams to work directly with Crohn’s and Colitis UK to support the delivery of more IBD nurses locally.

Andrew Mulholland, 24, from Antrim, Northern

Ireland, said: “Having my nurse to discuss options has been a total game-changer for me. She advises me of options and has greatly improved my quality of life. I still have Crohn’s, but I am now free to live how I want. I wish I could have had access to an IBD nurse sooner.”

JOIN OUR CAMPAIGN Visit www.crohnsandcolitis.org.uk/ get-involved/world-ibd-day

Better access to toilets and the need for more IBD nurses were among the issues discussed during a House of Commons debate.

The parliamentary debate, sponsored by Anne Main, MP for St Albans, included topics fielded from the Facebook community of Crohn’s and Colitis UK. Among the issues raised were concerns about diagnosis and referral, prescription charges, and the need for more research. Low awareness levels about IBD were also highlighted.

During the debate, Jane Ellison, parliamentary under secretary of state for public health, said: “I hope it demonstrates to those watching and those who participated in such great numbers in the Facebook debate that parliament is taking this issue seriously.”

FOR MORE INFORMATION You can watch the debate and read the transcript at www.crohnsandcolitis.org.uk/news/ successful-crohns-and-colitisdebate-in-house-of-commons

IBD NURSES HELP WITH A

38%

reduction in inpatient length of stay

19%

reduction in patient hospital visits

Anne Main MP sponsored the debate

NOTE BOOK

PATIENT EDUCATION PROGRAMME SUCCESS COURSE PIONEERED BY NORTH-WEST IBD SPECIALIST NURSES CAUSES A STIR

A

face-to-face patient education programme developed by specialist nurses in north-west England is attracting attendees from outside the region.

The programme, which meets one of the IBD Standards goals and is supported by Crohn’s and Colitis UK, has been successfully run for the

past three years. It features education sessions covering topics from drug treatments to diet and pregnancy, with around six sessions a year held for IBD patients, and their family and friends.

Veronica Hall, an IBD nurse who led the North West Patient Education Programme, said: “We sent out questionnaires through eight hospitals in

the area. We checked patients’ knowledge with the Crohn’s and Colitis UK knowledge score and it broadly came back indicating that their knowledge in relation to IBD was poor.”

She added: “We asked them what things they wanted to know about and we developed the education programme from what they told us.”

Speakers have included IBD nurses, psychologists, gastroenterologists and dieticians. Hall and her colleagues have developed a presentation, resources and format to enable other regions to deliver the programme as well.

Hall added: “I am really pleased with our success and we have already had people travelling from as far away as Northampton.”

RESEARCH EXAMINES CANCER RISK WITH ASSOCIATED IBD PATIENTS WITH PRIMARY SCLEROSING CHOLANGITIS MORE LIKELY TO GET COLORECTAL CANCER

AWARD FOR IBD NURSE Kay Greveson, founder of the IBD Passport, was named Gastrointestinal/ IBD Nurse of the Year at the 2016 British Journal of Nursing Awards. The London-based IBD clinical nurse specialist set up the online resource for people with IBD who wish to travel abroad. See www.ibdpassport.com

8 • SUMMER 2016 • CONNECT

An investigation by researchers at the University of Oxford funded by Crohn’s and Colitis UK has considered the immune response in patients with primary sclerosing cholangitis (PSC)associated Inflammatory Bowel Disease.

PSC is a chronic liver disease and there is four to five times the risk of colorectal cancer in patients with PSC and Ulcerative Colitis compared with those

Primary sclerosing cholangitis

who only have Ulcerative Colitis. The study observed a distinct inflammatory response in patients with PSC­-Colitis compared with patients with Ulcerative Colitis and healthy controls.

Dr Alessandra Geremia, based at the John Radcliffe Hospital, says that the identification of specific immune pathways involved in inflammation and Colitis-associated cancer is necessary to develop specific therapeutic strategies.

RESEARCH ROUND-UP

LATEST FINDINGS

TEST BRINGS HOPE OVER HIDDEN IBD CONCERNS

NEW TOOL ACKNOWLEDGES CHANGEABLE SYMPTOMS

SHUTTERSTOCK, CAVALLINI JAMES/BSIP/SCIENCE PHOTO LIBRARY

U

p to three quarters of patients with Inflammatory Bowel Disease (IBD) experience incontinence problems, yet their concerns have been largely undetected until now.

Researchers at King’s College London, funded by Crohn’s and Colitis UK, have developed a questionnaire to enable them to assess bowel incontinence more effectively, improve quality of life and give IBD patients a voice.

The team, led by Dr Lesley Dibley (below), tested the questionnaire on 190 participants. She said: “This is a difficult topic to talk about, so patients can explain their situation through the questionnaire instead of having to verbalise it. We have plenty of evidence that suggests people would be more willing to talk about the problem if the clinician opened the conversation.”

A tool currently used to assess bowel incontinence in the general population was found to be unsuitable for IBD patients. This is largely because it ignores the changeable nature of their symptoms, but also fails to ask about

other symptoms that IBD patients identify as important.

People with IBD helped develop the new questionnaire by identifying the current tool’s strengths and weaknesses, and what they felt was missing.

IBD patients are now being asked to complete the form before and after receiving an intervention to manage incontinence, within a clinical trial.

Researchers hope the data collected will demonstrate the effectiveness of the new questionnaire, enabling a full clinical assessment of bowel symptoms in people with IBD and showing any treatment’s effect on symptoms.

Dr Dibley added: “We will know whether the new [questionnaire] is effective by comparing results against other tools that are already proven.”

The research team are pursuing additional funding to develop short and electronic versions of the questionnaire.

FOR MORE INFORMATION www.crohnsandcolitis.org.uk/about-inflammatorybowel-disease/publications/ managing-bowel-incontinence-in-ibd

PATIENTS CAN EXPLAIN THEIR SITUATION USING THE QUESTIONNAIRE, INSTEAD OF HAVING TO VERBALISE IT

A study led by Dr Christian Selinger has found that rates of voluntary childlessness are higher in women living with IBD than among the general population. Of the 1,300 women surveyed, 17% were identified as voluntarily childless.

The research highlighted that disease burden was a contributing factor, and suggested that patient education programmes could correct misconceptions and alleviate patient concerns.

FOR MORE INFORMATION Visit www.crohnsandcolitis.org.uk/ publications to download information sheets on fertility and pregnancy with IBD

GET INVOLVED Crohn’s and Colitis UK is looking to recruit lay members to our Medical and Living with IBD Research Award Panels.

Every year, we award around £500,000 in research grants to help health professionals develop better treatments and support for people with IBD. A lay member brings a patient’s perspective in the process of reviewing grant applications.

FOR MORE INFORMATION Contact research@crohnsandcolitis. org.uk

NOTE BOOK TOILET BILL IS BLOCKED CONCERN AS PUBLIC HEALTH LAW FALLS AT THE LAST HURDLE A bill that would have forced all Welsh local authorities to improve access to toilets was voted down at its final stage.

The Public Health (Wales) Bill aimed to create a duty on all 22 local authorities in Wales to assess and work towards meeting local needs for access to toilets. Crohn’s and Colitis UK had worked with Welsh Assembly members to improve the bill, which could have significantly enhanced access to toilets for people with IBD. However, disagreements between political parties over other parts of the bill meant it failed to become law.

Andy McGuinness, policy and public affairs officer from Crohn’s and Colitis UK said: “We are very disappointed this bill has fallen. Its proposals recognised for the first time in the UK that access to toilets is a public health issue.

“Crohn’s and Colitis UK will work to ensure this is back on the agenda of the new Welsh Assembly.”

FOR MORE INFORMATION www.crohnsandcolitis.org.uk/news/ public-health-wales-bill-falls-atthe-last-hurdle

Metro: “We’re a community bank”

YOU CAN TAKE IT TO THE BANK COMPANIES URGED TO FOLLOW IN METRO BANK’S FOOTSTEPS

BY MAKING TOILET FACILITIES AVAILABLE TO THE PUBLIC

M

etro Bank has been praised for making its facilities, including toilets and baby-changing rooms, available for general public use at its 41 branches across London and south-east England. Other companies are being urged to follow suit.

Kevin Barrett, regional director at Metro Bank, said: “As a community bank, we pride ourselves on supporting local residents and businesses. We recognise the vital and important work that Crohn’s and Colitis UK do, and we look forward to working with the charity to help raise awareness of such an important cause.”

WORK CALL MAKE CROHN’S AND COLITIS UK YOUR EMPLOYER’S CHARITY OF THE YEAR Crohn’s and Colitis UK is urging members to help raise awareness and funding by asking their employers to make it their charity of the year.

Firms will often pick a charity with a connection to a staff member as part of their corporate social responsibility.

Joanna Pearce, corporate partnerships manager at Crohn’s and Colitis UK, said: “By

supporting the charity, employers would be joining the fight against Crohn’s Disease and Ulcerative Colitis. This can help raise awareness and understanding of these lesser-known but life-limiting diseases.”

Santander chose Crohn’s and Colitis UK as its charity of the year in 2015, and donated just over £20,000.

FOR MORE INFORMATION contact partnerships@ crohnsandcolitis.org.uk

PRESCRIPTIONS TO REMAIN FREE IN NORTHERN IRELAND PROPOSAL TO REINTRODUCE CHARGES IS REJECTED

DAVID LEVENSON / ALAMY, VIEW PICTURES/REX/SHUTTERSTOCK, KUMAR SRISKANDAN / ALAMY

P

eople in Northern Ireland with an Inflammatory Bowel Disease will continue to benefit from free prescriptions, after proposals to reinstate charges were rejected.

Charges were abolished in Northern Ireland in 2010 and Crohn’s and Colitis UK, which acts as co-chair of the Prescription Charges Coalition, has vigorously opposed proposals to bring them back.

Politicians from all parties, including former health minister Simon Hamilton, expressed their commitment to ensuring people with long-term conditions do not have to pay.

Critical to this was the voice of all those who took part in a Crohn’s and Colitis UK-led survey that formed the basis of the organisation’s submission to the Northern Ireland Executive, those who contacted their members of the legislative assembly

NEW PATIENT GUIDELINES FORMULATED PATIENTS AND MEDICS MAKE VOICES HEARD The result adds to push for changes in England

(MLAs) on the issue, and our local group members in Northern Ireland.

Jackie Glatter, health service development manager, said: “This is a significant decision and very positive outcome for people with Crohn’s Disease and Ulcerative Colitis in Northern Ireland, which also sends

THIS IS A SIGNIFICANT AND POSITIVE OUTCOME

a strong message to politicians in England.”

Prescription charges in England have risen again to £8.40 per item, leading to calls for the country’s medical exemption list – which excludes many people with long-term conditions – to be reviewed before its 50th anniversary in 2018.

You can tell your MP what you feel about this at the link below.

FOR MORE INFORMATION visit www.crohnsandcolitis.org. uk/news/tell-your-mp-howprescription-charges-affect-you

A new set of patient guidelines has been created by the European Crohn’s and Colitis Organisation (ECCO) and the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA).

They aim to improve care and the quality of life for IBD patients, including by making available the latest clinical research, and were drawn up after consultations with patients and medical staff.

FOR MORE INFORMATION www.ecco-ibd.eu/index.php/ publications/ecco-efcca-patientguidelines.html

GET INVOLVED VOLUNTEERING OPPORTUNITIES NEAR YOU Crohn’s and Colitis UK has teams of active volunteers all over the UK – and now it’s easy to find out what’s going on near you. Visit the links below if you want to get involved in local volunteering and fundraising events.

Crohn’s and Colitis UK hosted a reception at the Northern Ireland assembly last summer

FOR MORE INFORMATION www.crohnsandcolitis.org.uk/events www.crohnsandcolitis.org.uk/ volunteering

XXXXXXXXXX

SAY IT LOUD

An innovative social media campaign has created a support network and raised awareness of IBD

M

ost of us would find sharing a photograph of our bare stomach a bit nerve-racking, but it would take real bravery if you had an Inflammatory Bowel Disease (IBD) and scarring or an ostomy.

Yet that is exactly what a group of women behind the #GetYourBellyOut (GYBO) campaign have inspired thousands of people to do.

The initiative began with a few simple clicks, but two years later #GetYourBellyOut has become a global awareness and fundraising campaign, run by Lorna Haymes, Victoria Marie and Gem Willingham, with a Facebook community of more than 16,000.

“It was originally the four of us who started it,” says Lorna Haymes. “I was

12 • SUMMER 2016 • CONNECT

talking to a lot of people on Twitter who might be getting ostomies, and Gem was fundraising. Sahara [who has since chosen to focus on a new project] posted a picture of her belly in reaction to the ‘no make-up selfie’, and Victoria, who was already blogging her experiences at the time, came up with the #GetYourBellyOut name.

“We thought we could raise awareness on Twitter for an hour, but it carried on and on, so we decided to set up a Facebook support group and awareness page. It has gone from strength to strength.”

Posting a picture of her belly was particularly poignant for Lorna.

“In my first picture I was still in bed,” she says. “I was only about three hours out of surgery. You could see the stoma and the blood. I wondered if people were going to call me disgusting.”

Rather than negative feedback, the

#GetYourBellyOut campaign has inspired significant support and raised awareness of IBD. “The awareness now is unreal,” says Lorna. “A lot more people are willing to say, ‘I have IBD, that does not make me a bad person.’”

From left to right: Victoria, Gem and Lorna

IT IS EXTREMELY REWARDING WHEN SOMEONE TAKES THE TIME TO COME UP TO YOU AND SAY, ‘YOU MAKE A REAL DIFFERENCE TO PEOPLE’S LIVES’ #GETYOURBELLYOUT

More than 200 of the campaign’s supporters attended a charity evening at the National Motorcycle Museum, Solihull, to celebrate the campaign’s second birthday in April. Crohn’s and Colitis UK was presented with a cheque for almost £50,000 raised by #GetYourBellyOut supporters.

“It was the first time I had met the majority of the room, and it felt like meeting old friends,” says Victoria.

“Running the campaign is tiring, but it is extremely rewarding when someone takes the time to come up to you and say, ‘You make a real difference to people’s lives.’”

Gem was inspired to help others after being diagnosed with Crohn’s Disease 11 years ago. “Life was a roller coaster,” she says. “I felt lost and alone. I want to reach out to help people with IBD on their journey.

I’ve been there, I’ve closed up and

not spoken to anyone – I just suffered in silence.”

It’s the Facebook group in particular which allows those involved in #GetYourBellyOut to give direct support to people who need help.

“It’s so heart-warming to see people reaching out to our group in their hour of need,” says Gem. According to Lorna, the team have a list “as long as your arm” of future goals, including improving the standards of care, and access to IBD and stoma nurses.

“An operation can be traumatic,” she says. “Sometimes you are rushed into theatre and wake up with an ostomy bag. You are in hospital for five days and then they send you home with very little support. For a young person especially, it feels like your whole life has just been flipped on its head. You think you are going to uni

and the next thing you’ve had part of your bowel removed.”

Victoria points out that those involved in running the campaign understand the areas which need improvement since they all have IBD. She is particularly keen on seeing more mental health support.

“I’m well physically but like many others with IBD, I have anxiety,” she says. “The community would like more help and awareness.

It’s a massive life change to have a diagnosis, and the support is lacking. The medications can make you severely ill, plus the anger and frustration of ‘why me?’ can be challenging to deal with.”

FOR MORE INFORMATION To join in the campaign simply post a photograph of your belly using the hashtag #GetYourBellyOut and donate by texting GYBO50 £3 (or alternative donation amount) to 70070 in aid of Crohn’s and Colitis UK CONNECT • SUMMER 2016• 13

WALK TH Television stars Rylan Clark-Neal and Sam Faiers have joined thousands of volunteers to battle IBD. How? By putting on their walking shoes

WORDS PENNIE TAYLOR PHOTOGRAPHS JOHN ROWLEY

A

ll over Britain, people have been stepping up in the fight against Inflammatory Bowel Disease (IBD). On 9 July in Edinburgh, supporters of Crohn’s and Colitis UK will take to the streets for WALK IT, raising awareness and crucial funds for the charity’s work, and following in the footsteps of the thousands who took part in successful events in

THE RETIRED CHILDREN’S WORKER

FUNDRAISING

HIS WAY London, Swansea, Manchester, York and Rutland.

Celebrity supporters of the six national fundraising walks include TV presenter Rylan Clark-Neal.

“My mum has lived with severe Crohn’s Disease since before I was born, and the condition really shaped my childhood,” he says. “When I was growing up, I thought my mum was the only person with the disease.

I am supporting WALK IT to help

other families know that they are not alone.”

TV personality Sam Faiers was diagnosed with Crohn’s in 2014. “The condition has caused me agonising pain, changed my body and altered my lifestyle,” she says. “While it’s been a rough journey, it’s made me take stock, especially with the arrival of baby Paul.

I wanted to celebrate WALK IT to help further awareness, and raise vital funds.”

Sam Afhim, director of income

generation for Crohn’s and Colitis UK, says: “WALK IT is so much more than a sponsored walk. Our national events are family fun days, packed with entertainment. People chose to walk special 5k or 10k routes, or came along to lend their support and meet people from the IBD community.”

FOR MORE INFORMATION The last WALK IT of 2016 is in Edinburgh on 9 July.

Register at www.crohnsandcolitis.org.uk/fundraising

THE INTERNET ENTREPRENEUR

THE CHARITY WORKER THE HR MANAGER

‘I WANT OTHERS TO HAVE ACCESS TO SPECIALIST CARE’

CHARLOTTE GUINEA Charlotte Guinea, 24, was diagnosed with Ulcerative Colitis at 16, having endured stomach pains all her life. “It was a bad age to become seriously ill,” she says. “I was put on steroids and gained weight, and was teased a lot at college. I hadn’t heard of IBD until then, and it was a very isolating time.”

THE HR MANAGER

Driven by a passion to ensure that more people understand IBD, and appreciate what it is like to live with it, Charlotte registered for the London WALK IT. “I am determined to do what I can to raise awareness,” she says. “So many people feel that they have to face this alone. I

want them to know that there is help available.”

Now a human resources manager with the family’s airline services company, Charlotte’s condition forced her to drop out of university, and she has lost jobs due to ill health. “My illness has been severe, and I’ve had lots of operations,” she says. “Thanks to specialist

care, things are getting better for me. But I do worry about other people’s access to IBD specialists, given NHS cutbacks.”

Charlotte hopes money raised by WALK IT will go towards improving specialist care, funding research into IBD and the development of treatments, and spreading the word about Crohn’s and Colitis UK. “It is vital people living with IBD know where they can turn for advice and support,” she says. “It has been a lifeline for me.”

THE INTERNET ENTREPRENEUR

‘EXERCISE IS HELPING ME AVOID FLARE-UPS’

JONATHAN BENSON Health and fitness helps Jonathan Benson, 34, to manage his Ulcerative Colitis, so taking part in WALK IT is the perfect way for him to support the work of Crohn’s and Colitis UK. “It is important to continue to raise awareness of the impact that IBD can have on people’s lives,” he says. “We may look OK on the outside, but still be struggling inside. I am happy to do what I can to help.”

Jonathan, who runs a web-based business from his office in Hitchin, Hertfordshire, was declared a ‘health hero’ by Men’s Health magazine last year.

A self-confessed fitness addict, Jonathan

fundamentally changed his diet and lifestyle when his IBD was diagnosed at the age of 21. Having been told by his specialist it was likely he would have to lose part of his colon,

and may need to take powerful medicines to control his symptoms, Jonathan took matters into his own hands.

These days he eats according to a strict regime, exercises in the gym six days a week and attends regular yoga classes.

“I know there isn’t a cure, but I haven’t had a flare-up for six or seven years,” he says. “I put that down to my diet and exercise, and a little bit of luck.”

FUNDRAISING

‘TELLING PEOPLE IS HARD, BUT AWARENESS IS IMPORTANT’

WENDY TROMANS Wendy Tromans, 70, from north London, developed Ulcerative Colitis in her late 50s, and feared life would have to change. “It was bad at first, and I was afraid to leave the house,” she says. “I was working as deputy manager in a children’s centre and I was always turning up late, and dashing away from meetings to make it to the loo, which was difficult.

But thanks to the brilliant IBD specialist nurses at the Royal Free Hospital, London, I got it under control. Now I can do pretty much what I want.”

Taking part in WALK IT is something Wendy would have thought beyond her when she was newly diagnosed.

THE RETIRED CHILDREN’S “Telling people was one of the hardest things to WORKER

do,” she says. “But awareness is important, so I am happy to give my support.”

Thanks to long periods between flare-ups, Wendy enjoys fulfilling what she

calls ‘granny duties’ to her four grandchildren. And she loves to travel. “Initially, I had my satellite out all the time, scanning for the nearest toilet and carrying spare clothing everywhere I went,” she says. “But I got past that.”

Last year, Wendy made it to China, and now has her sights set on the USA. “The fantastic care and advice I have received have given me the confidence to go where I like,” she says.

“I wouldn’t have thought that was possible before.”

‘I’M PROUD TO BE PART OF A STRONG COMMUNITY ONLINE’

LEE REGIS

Lee Regis, 31, had lived with his diagnosis of Crohn’s Disease for eight years before he found people he could talk to about it. “There was no-one to speak to who understood what life was like for me,” he says. “I was quite isolated before I discovered the Crohn’s and Colitis UK Facebook forums. Basically, I learned everything that way.”

That was two years ago.

Now Lee, who lives in Welwyn Garden City, helps to run the online IBD support group #GetYourBellyOut, which is an anti-stigma campaign with an online community

of more than 16,000 worldwide. “It boosts your confidence, helps to raise awareness and takes down taboos,” says Lee. “It’s a strong community, and I’m proud to be a part of it.”

Meeting online friends

face to face is one of the reasons Lee enjoys WALK IT. “It’s a chance for everyone to get together and have fun,” he says.

“And the cash we raise goes to help more people.”

Lee, who works for Age UK as a facilities manager, has two children – Sky (8) and Jack (5). “They show no signs of developing IBD, but that is my fear,” he says.

“Everything we do is about making things better for those who will be diagnosed with IBD in the future.”

THE CHARITY WORKER

TRAVEL

L IVE LIFE ‘ THE FULLE

– BAG OR NO

F Jessica and a friend on a trip to Brighton

18 • SUMMER 2016 • CONNECT

rom the suitcase that fails to appear on the carousel, to the four-star hotel that’s really a building site, we all have at least one holiday horror story. Your IBD needn’t be one of them.

It is natural to worry about eating a meal with unusual ingredients, asking for toilets in a foreign language, or even seeking medical help while abroad. Yet thinking carefully about where you are going to visit and planning for any situations your IBD

E TO EST

O BAG’ Whether swimming, surfing or soaking up the rays, a holiday offers the chance to relax and recuperate. Having IBD shouldn’t hold you back WORDS GEMMA BRIGGS PHOTOGRAPHS MATT POVER

may cause means you can relax and enjoy the fun of a trip away.

For Jessica Weatherby, a 25-year-old with Crohn’s Disease, a holiday to the Canary Islands was a welcome treat six months after having an ileostomy. “I felt ready,” says Jessica, who was originally diagnosed while travelling in New Zealand. “I needed a holiday in the sun. My doctors encouraged me to travel as life shouldn’t be put on hold.

Live it to the fullest, bag or no bag.”

Choosing a holiday that will cater for your IBD is probably the biggest

Doctors said Jessica should go on holiday

decision. This may be led by facilities, such as avoiding campsites or other places with shared toilets, or by cuisine.

If spicy food causes your condition to flare up you’ll probably want a destination with a wide choice of meals.

Once you have decided on the country, check if there are any health risks associated with that location before you book. Some IBD medications can affect vaccinations. If you are going to need jabs, speak to your IBD clinic beforehand. You should also ensure your travel CONNECT • SUMMER 2016 • 19

TRAVEL insurance covers your condition, and get a European Health Insurance Card (EHIC) for travel in Europe.

Once you reach your destination, think about how active you feel you can be. Jessica, who set up the popular blog itsgutsandglory.co.uk, describes herself as “a bit of a water baby”. She was worried about how to enjoy the sea sports and swimming that she loves.

“Having an ileostomy means you can only swim with your bag for about 45 minutes so I was quite conscious when swimming,” she says. “I purchased some flattering swim suits so my bag was comfortably pressed against me and it felt more secure. On days at the pool I wore bikinis, as I only went in for a dip to cool down.”

While some people would feel more comfortable hiding their bag, Jessica discovered she was happy with hers on display. “I did feel brave,” she says.

“Actually, I felt more confident when people looked at me, as ostomies are not something you see every day walking down the beach and I felt like I was making people more aware of them just by me being there.”

It is essential to take plenty of medication (enough to cover you if there are travel delays), a list of your medications, and a letter from your doctor outlining your treatment, in case you require medical assistance. Visiting a hospital abroad can be daunting.

“I was lucky enough to fall ill in an English-speaking country with excellent health care,” says Jessica, who was flown between hospitals by air

Jessica, left, has fun with her friends

With her bag visible, Jessica grew in confidence

BE PREPARED AN EXPERIENCED TRAVELLER WITH CROHN’S DISEASE, JESSICA WEATHERBY OFFERS ADVICE ON TRAVELLING ABROAD WITH AN IBD STAY COOL If you have an ileostomy drink plenty of water because you are at higher risk of dehydration in sunny weather.

COVER UP 2 Some drugs can cause your skin to be thinner than usual and extra sensitive, so wear 50+ SPF sun protection.

GET INSURED 3 No matter where you go, always buy travel insurance, just in case.

1

FLY HAPPY If you follow the normal procedure and don’t let it overfill, there is no need to worry about your bag being affected or bursting during a flight.

TAKE IT EASY 5 Only do what you can manage. If you don’t want to go on a boat trip then don’t. There is no pressure – it’s your holiday.

WATCH THE MENU 6 Be aware of the food you are eating. Hygiene levels differ wherever

4

I PURCHASED SOME FLATTERING SWIM SUITS SO MY BAG WAS COMFORTABLY PRESSED AGAINST ME AND IT FELT MORE SECURE

Follow Jessica’s simple advice for a great trip

you go and always take plenty of dehydration sachets with you.

TELL A DOCTOR 7 Let your GP and IBD nurse know you are planning to go away, and where you are going and staying.

ambulance after her admittance to A&E in New Zealand while travelling in 2014. “If this wasn’t the case, I think I’d have found the experience more stressful, if that’s possible.”

Being on the other side of the world also meant there was a delay before her family were able to be by her side. “When I was first admitted I missed my family,” she says. “They were about two days’ travelling time away from me and I felt very alone.

I made a friend in the next bed who took the role as my mum, and she sat and hugged me when I was upset.”

If the thought of seeking emergency care abroad worries you, visit the IBDpassport.com website, which has a global directory of IBD centres to enable easy referral. The site is full of advice including a multi-language Can’t Wait card that can be printed out to take with you in case of toilet emergencies.

This evidence-based resource was created by Kay Greveson, an IBD nurse specialist at the Royal Free

MAKE A LIST Always take with you lists of medication and contact details for family at home, insurance companies, GPs, doctors and hospitals. You can’t be too prepared.

8

Hospital, London, who was named IBD Nurse of the Year at the British Journal of Nursing Awards.

“It is nice to be recognised for all the hard work that I put into it, but it’s also great for the website to get this kind of endorsement,” says Kay. “It means that, instead of only me thinking it’s a good idea, other people think it’s a valuable resource.”

It may seem as though taking a holiday involves a huge amount of planning, but according to Jessica – who had a reversal last year and is now planning trips to New York, Bulgaria, Hong Kong and Thailand – it will always be worth it.

“You’ll have some worries but it’s the same as when you’re at home,” she says. “The main thing is you’re well prepared so pack plenty of bags, and medications and enjoy it. All the eventualities that kept you awake at night will probably never happen.”

FOR MORE INFORMATION Visit www.ibdpassport.com CONNECT • SUMMER 2016 • 21

Rick and his band have a “back-up plan” for when he is taken ill on stage

ANYONE WHO HAS GONE THROUGH PAIN FORMS A DIFFERENT CHARACTER TO THOSE WHO HAVE NOT

PROFILE

ROCKING IN A HARD PLACE

Rick Parfitt Jr talks about how Crohn’s Disease affects life in the fast lane as a GT3 racing driver and on the road with the RPJ Band WORDS GEMMA BRIGGS PHOTOGRAPHS PAUL STUART

R

ick Parfitt Jr is standing next to a gleaming Bentley Continental outside Morton’s private members’ club in London’s Berkeley Square, chatting with friends. It is tempting to dismiss him as the clichéd son of a pop star, whose father’s success with unstoppable rockers Status Quo has propelled him straight to the role of playboy without passing ‘go’.

Having known Rick for more than 10 years – we once worked together in high-pressure roles for a publisher – I know this shimmering image is a mirage. The Continental, which he will pilot in this season's British GT3 championships, is his to drive on merit (he was a 2013 British GT champion).

What’s more, his eponymous band is among the most sought-after events outfits in the world.

Aside from his natural talent behind the wheel and as a showman, it is Rick’s lifelong battle with Crohn’s

Disease that proves his determination and incredible work ethic.

“The preconception is that I’ve had an easy life with lots of money thrown at me, but it’s not the case,” he says.

“I did not see my father for 10 years except on TV, and had very little support or money. But for all this, I’ve done a lot. Anyone who has gone through hardship and pain and suffering forms a different character to those who have not.”

‘Character building’ would be an understated way of describing Rick’s childhood, with his Crohn’s diagnosis coming at a hospital in Germany aged nine. “I was misdiagnosed lots before then,” he adds. “I was at boarding school and times were very tough: I went to hospital, then back to boarding school, then back to hospital.”

Crohn’s was not a well-known illness in the 1980s, and there were no internet searches to help find support.

The “very closed environment” of

The Bentley Rick Parfitt Jr will race this season

boarding school must have been a lonely place in which to battle such an condition, with Rick setting alarms on his watch to remind him to take pills during the day.

“I was really sporty throughout my teens and won everything at school,” he says, “but then there were moments when I had to run off the field and I’d be sitting on the loo. It hampered everything I wanted to achieve.”

His health progressively worsened and he turned 21 years old weighing five and a half stone. “I was so depressed, thinking, ‘this is my life’. It affects you mentally, which is horrific.”

A bowel resection resulted in massive internal bleeding and horrible pain that at first left Rick unable to walk. While he felt that his life finally began aged 23, having Crohn’s had damaged his mental state and social abilities.

“I was terribly insecure,” he says.

“[When you live with IBD – Inflammatory Bowel Disease] you do not go to parties and you do not want to discuss the symptoms because it’s embarrassing. It is an unseen illness: the social awkwardness, the fatigue, the possibility of what could happen. I still carry the scars. It has taken up until the last few years to be comfortable with who I am and with my peers.”

Karting gave Rick a route back into a social world – “I could put a helmet and suit on and hide how I was” – and he soon showed talent, becoming a manufacturer-backed driver. The racing lifestyle had a detrimental effect on his health, however, with repeated flare-ups leading to a second bowel resection and abscesses. That he has come through this, and managed his dual careers, is in no small part due to his wife, Rachel, although he is candid about the difficulties of finding love when you suffer such ill health.

5 THINGS YOU DIDN’T KNOW ABOUT RICK PARFITT JR THE RPJ BAND l Bringing together a collection of accomplished session musicians, Rick founded the RPJ Band with the intention of wowing live audiences

24 • SUMMER 2016 • CONNECT

PERFORMANCE l He has performed alongside greats including Eric Clapton, Robert Plant, Bryan Ferry, Spandau Ballet, and … his father’s band Status Quo

IT HAS TAKEN UP UNTIL THE LAST FEW YEARS TO BE COMFORTABLE WITH WHO I AM “I know that everything I have, I’ve been able to achieve with the support of my amazing wife,” he says. “I did well up to a point, but I was missing that other self of me. I did not think I would ever meet someone; I’d never show my other side, the illness side.

“I thought people would not like me, that they just wanted the rock star

LOOKALIKES l Rick is often mistaken for his old friend Jenson Button. Rick is pictured with his former racing partner Tom Oliphant, right RACING HIGHS l Rick was the 2013 British GT4 Champion, his highest achievement as a

racing driver. A firm favourite with fans, he was voted Mobil 1 driver of the year in 2014 GOALS l As an ambassador for Crohn’s and Colitis UK, Rick is helping fight IBD. He would also like to compete in the Le Mans 24-hour race

PROFILE

You can get very depressed when you cannot work, it affects your capacity to do anything.”

It is natural for someone with an IBD to feel uncomfortable talking about their condition, but Rick takes a rather radical approach. “I’m really upfront with people, to almost extremely graphic detail,” he says.

What kind of reaction do you get?

“They find it funny. The less embarrassed you are about it, the less embarrassed they are. If you do not want to talk about it, people pick up on that and they find it hard to process; it becomes taboo. If you can be upfront about it, and even joke, then it’s not even an issue.”

This isn’t a strategy that would work for everyone with Crohn’s or Colitis, but I can see Morton’s. They how a man who is able hint at the to get a room full of infectious force of his bored businessman ‘She’s the yin character, which is why throwing moves on the dance to my yang’ his RPJ Band is so floor can genuinely help successful. I have seen this group of change preconceptions about IBD. session musicians rock former Top An ambassador for Crohn’s and Gear presenter Richard Hammond’s Colitis UK, Rick set up the RPJ 40th birthday party, with Rick the Foundation, which helped to fund a biggest personality in the room. research project last year, and has also “Being on stage means I can put on raised awareness and funds through a a persona; it’s the same when I put on series of wildly popular rock balls, that my race gear and helmet,” he says. he promises will soon return.

“There have been times when I’ve been “I’ve taken a couple of years off in awful pain, taking morphine before [from the events] because my band has going on stage. I can put on a smile to become bigger and bigger,” he says. the audience and pretend to be rocking “Last year we did just shy of 100 gigs; out, but I’ll be buckled up in pain.

I was physically and mentally broken.

I have come off stage and collapsed.

However, plans are afoot with a major But my band are amazing. We have international artist. I can’t say who but fail-safe songs that my band trust me, it would be once in a lifetime. members can sing if I need to We will be bringing the ball back.” rush off stage. Not many bands As we leave Morton’s, Rick talks of have that kind of back-up plan.” the year ahead. “It’s all about rocking As well as the support of his and racing,” he says, “so the plans are to band members, Rick is keen to rock as many people at as many festival stress the importance of stages as possible. With the racing, it’s friendships to people who have a the toughest British GT grid in history, chronic illness. “I have the most so my hopes are to finish in the top amazing circle of friends who get five, perhaps get a few podiums.” me through,” he says. “Friends He turns around on the steps always make you smile when outside. “Actually, sod that, let’s go and dark thoughts enter your head. win,” he says with a grin.

JAKOB EBREY PHOTOGRAPHY, DAVID M BENETT / GETTY IMAGES

Rick Parfitt Sr joins his son at the track, and below, Rick and his wife Rachel Gretton in 2014

and the racing driver. I did not think anyone would like me for myself. I consider myself quite boring and the symptoms that come with Crohn’s are embarrassing. But when I met Rach … well, she’s incredible. She’s the yin to my yang. She’s an amazing woman who understands everything.”

Today, aged 41 and happily married, he is much more sensible, even considering turning vegan for its possible dietary benefits, although he adds that being half-German it would be a struggle to give up meat and dairy.

He no longer “dresses like an onion” – layering clothes to disguise his tiny frame – and has a touch of the dandy, wearing a burgundy velvet jacket and glittered shoes for the evening at

CONNECT • SUMMER 2016 • 25

‘ I FACE UNCERTAINTY, BUT I LIVE IN HOPE’ Managing an IBD was already a challenge for Kirsty Gibson. So how did she cope when she was diagnosed with an associated condition?

WORDS PENNIE TAYLOR PHOTOGRAPHS JEREMY SUTTON-HIBBERT

K

irsty Gibson knew she wanted to become a nurse when she was seven years old, and hospitalised with what turned out to be the early effects of Ulcerative Colitis (UC).

“I was in for weeks while they tried to work out what was wrong with me,” she says. “I watched how wonderful the nurses were with my family, and with me, and thought ‘that’s what I want to do when I grow up’.”

Now aged 26, Kirsty has achieved her ambition. She works as a mental health nurse near her home in Ayr, south-west Scotland, and is still struggling with her illness. “I sometimes get emotional and think ‘it’s not fair, it’s just not right’,” says Kirsty. “I’m only young, yet most of my life I’ve been unwell. And I know it’s not going to get any easier.”

The UC that dominated Kirsty’s childhood, causing her extreme abdominal pain, nausea, severe exhaustion, sudden diarrhoea and projectile vomiting, has meant repeated punishing treatments over the years. As a young girl, her growth was

26 • SUMMER 2016 • CONNECT

affected by the steroids used to control her symptoms. As a teenager, she took sulphasalazine until it stopped working. Mercaptopurine proved effective before she reacted to it and developed a bone marrow infection.

Since 2009 she has been taking low-dose Mezavant and steroids that cause weight gain and mood swings.

“Last Saturday it was one of the acts on Britain’s Got Talent that set me off,” says Kirsty. “I have no idea why it made me cry, but it did.”

To top it all, just before Christmas 2010, Kirsty was diagnosed with primary sclerosing cholangitis (PSC), an uncommon chronic liver disease in which bile ducts progressively decrease in size due to inflammation and scarring. “I had been having regular blood tests and liver function tests for years,” says Kirsty. “Then I had a liver biopsy, and that confirmed it.”

The news was broken to Kirsty when she was copied in to a letter from a consultant to her GP. At work, on a student placement, her ward manager asked what was wrong, and Kirsty told her. “It was a manic day, but she persuaded me to call my IBD

Kirsty Gibson has a chronic liver disease

REAL LIVES

I’M ONLY YOUNG, YET MOST OF MY LIFE I’VE BEEN UNWELL. AND I KNOW IT’S NOT GOING TO GET ANY EASIER

CONNECT • SUMMER 2016 • 27

REAL LIVES

PSC AFFECTS AROUND 2% OF PEOPLE WITH COLITIS [Inflammatory Bowel Disease] nurse specialist, and then researched what it all meant,” says Kirsty. “She found out that the tennis player Elena Baltacha was living with PSC, and told me about how she was an active young woman who was managing it.

I’ll always remember how she tried to reassure me.”

That was when Kirsty became aware that PSC – the disease linked to Baltacha’s death in 2014 at the age of 30 – is a form of liver disease associated with UC. “I knew there was an increased risk of osteoporosis and arthritis with IBD, but I had no clue about liver disease,” she says. “That came as a shock.”

PSC is a rare so-called extraintestinal manifestation (EIM) of IBD. The auto-immune inflammatory response that causes Crohn’s Disease and UC can also trigger problems in other parts of the body. More common EIMs include joint inflammation (arthropathy) and peripheral arthritis; bone problems and osteoporosis; inflammations of the eye; ulcers within the mouth, ear and nose; and skin diseases such as erythema nodosum and pyoderma gangrenosum.

“Around 50% of people with IBD experience at least one EIM, which can present first,” says Chris Probert, professor of gastroenterology at the University of Liverpool.

“Often, back pain is an early sign. It is important that patients and their clinicians know what to look out for.”

28 • SUMMER 2016 • CONNECT

Kirsty manages symptoms to live life to the full

Rare EIMs include pulmonary disease, affecting the lungs and airways, and liver disease. “PSC affects around 2% of people with Colitis, and it is vital that these patients are closely monitored,” says Prof Probert.

Most EIMs are a result of active inflammatory disease on various organs. Others appear to be side-effects of treatment.

“There is a type of psoriasis, for instance, that may be associated with biological medicines,” says Prof Probert. “As specialists, we have to be aware that EIMs are a diverse group of diseases, and treatments need to be different depending on which parts of the body are involved.”

Prof Probert, vice-chair of the clinical advisers committee of Crohn’s and Colitis UK, believes most gastroenterologists are alert to EIMs and understand the body’s inflammatory pathways. “It’s all part of IBD, which is our area of expertise,” he says. “Every gastrointestinal specialist should be asking new patients

about any eye, joint and skin problems as it helps to paint the picture of what is going on with them.”

Similarly, dermatologists are increasingly clued up about EIMs. “Skin problems are often how IBD manifests, so skin specialists know to refer certain patients on to us,” says Prof Probert. “Clinical awareness is growing, and health professionals are questioning symptoms to see if they might be related to IBD. But we have a great deal more to do to reinforce the public’s understanding of what to look out for.”

Prof Probert strongly believes patients should be involved in planning their own care. “It’s so powerful, when someone understands what is happening to them and prompts discussion,” he says. “Doctors may sometimes miss things, and an informed patient working in partnership with them can help ensure the right questions are asked and the right things happen at the right time.”

With IBD and its extra-intestinal manifestations, awareness can be life saving. For instance, blood clots pose a particular risk to people with IBD, and Prof Probert believes everyone with IBD who undergoes surgery, for whatever reason, should receive blood-thinning injections. “It’s worth checking, if you know to ask,” he says.

“No-one minds being reminded.”

Looking to the future, Prof Probert is confident medical research will transform the experience of people living with IBD and EIMs. “Across the world people are working extremely hard to unpick the puzzle of IBD,” he says. “Our knowledge is moving fast.”

Kirsty Gibson also has high hopes.

“I have seen so many tremendous developments over the past 20 years,” she says. “I can only imagine what the next 20 might hold.”

After a period of welcome respite from the debilitating symptoms of IBD and liver disease, for the past year Kirsty has been experiencing more flare-ups. Exhausted and unable to sleep, she suffers constant abdominal pain that regularly makes her feel as though she will vomit or pass out. Yet she still goes to work, and appreciates the effort her colleagues make to

LAUGHTER AND OTHER MEDICINES In retrospect, Thea Tsamplakos realises that the lower back pain she first experienced as a teenager was an early sign of Inflammatory Bowel Disease. “At the time, it was put down to stress, growing pains, puberty, even a rumbling appendix,” she says.

“When the stomach problems started, no-one made the link.”

ADAPTING TO CROHN’S More than 30 years on, writer Thea has learned to live with Crohn’s Disease and the extraintestinal manifestations that come with it. She now has arthritis in her back, knees and wrists, eye problems and painful mouth ulcers. “Some days are worse than others,” she says.

“But my family is brilliantly supportive.”

Thea lives with husband Yanni, daughter Alexia (24) and son Jay (21) in Ashford, Surrey.

They have all adapted to Thea’s health needs.

“The only periods of remission I ever had came when I was pregnant,” says Thea.

“When the kids were little, our lives revolved around how close I could be to a loo as I’d need to go maybe 30 times a day.

Thank goodness our house was next door to a park, or they’d never have got out.”

THE FATIGUE CAN FLOOR ME, AND JOINT SWELLING MAKES LIFE HARD adjust her shifts to suit how she is feeling day to day.

“I hope there are new medicines that can make me well again, and keep me well,” says Kirsty. “However, I am aware I will have to go for surgery to have a J-pouch fitted soon, and as the years go by I know my risk of cancer is increasing. I am facing uncertainty, and may need a liver transplant one day. But I do live in hope.”

In her spare time, Kirsty is volunteer co-ordinator with her local Crohn’s and

COPING STRATEGIES Humour is one of Thea’s coping mechanisms. She also loves to work on her allotment – when she feels able. “The fatigue can floor me, and joint swelling makes life hard,” she says. “When that hits, there is literally nothing I can do.”

Thea has learned to spot the warning signs of a flare-up. “The hairs go up on my arms, I get pins and needles down my face and a clammy feeling comes over me,” she says. “Then I know I have two minutes to find a loo.”

Thea is now on adalimubab, which is relieving her Crohn’s symptoms. “That’s the only drug that has really worked for me,” she says.

She has cortisone injections in her joints to relieve inflammation, and is facing surgery on her back to block nerves.

“More people with IBD need to know about the other things that could affect them,” says Thea.

“Forewarned is forearmed, after all.”

Colitis group, and helps others living with IBD. “I am struck by the lack of psychological support for people coping with the consequences of such a life-changing diagnosis,” she says.

“There are young people out there, just like me, who don’t know where to turn for help. If I can make a bit of a difference for them, I’ll be happy.”

FOR MORE INFORMATION Visit www.crohnsandcolitis.org.uk/ about-inflammatory-bowel-disease CONNECT • SUMMER 2016 • 29

YOUR VOICE

OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

TELL YOUR STORY

Gemma and Alister enjoy their big day

We love hearing from our volunteers and fundraisers, and your stories can do a fantastic job of inspiring others.

Whatever you’ve been up to in the name of Crohn’s and Colitis UK, we’d love to know about it. Get in touch at connect@ crohnsandcolitis.org.uk

DEDICATION RECOGNISED Crohn’s and Colitis UK’s Oxfordshire group were delighted to be present for the dedication of a new ward – 5F Infusion Room – at the John Radcliffe Hospital to Julie Andrews, a volunteer who died last January aged 51.

Husband Martin and close friend Jackie cut the ribbon.

A group Facebook post said: “Julie and her many friends at RPS Abingdon Ltd raised so much money for us over the years – and they and Julie’s family continue to do so.

Even at her funeral, the fundraising went on.”

Julie had raised more than £2,500 for Crohn’s and Colitis UK, and a further £1,600 was raised at her funeral.

30 • SUMMER 2016 • CONNECT

NEWLYWEDS SAY I DO TO A GOOD CAUSE Couple explain why they donated to Crohn’s and Colitis UK “The date was picked, church, venue and band booked … then it was time to decide on finer details,” explains Gemma Boyd from Pomeroy, Co Tyrone.

“We were never going to waste money on ‘sugared almond’ favours so decided to donate to Crohn’s and Colitis UK. This was a much easier decision than the

dress, which took nine shops. I simply emailed the charity and they couldn’t have been more helpful.

“Crohn’s and Colitis UK is close to our hearts as Alister was diagnosed with Ulcerative Colitis in 2013.

He takes medication daily, and requires steroids when flare-ups occur. We are hopeful that the future is a

healthy one with no surgery, and find the charity’s resources very informative.

“On Facebook, it is great to read real-life stories of people in similar situations to Alister, and know that support is available.”

FOR MORE INFORMATION Contact fundraising@ crohnsandcolitis.org.uk

FUNDRAISING FOCUS PAYS DIVIDENDS

F

ew groups can rival the busy calendar of the team in Leeds, led by chairman Graham Bell – or their fundraising achievements over the past five years that have amounted to around £100K. The money raised by the group and individual local members has been donated to various local and national causes including research, Graham says, “because we’re all keen on finding a cure”.

Some of it is also being invested in a huge national event taking place at Leeds stadium later in the year, aimed at the IBD community, and particularly families.

So how have they raised so much? “Walks, charity fashion shows, some of us did the three peaks challenge, dog walks … we’ve got a good partnership with Leeds Arena and they allow us to collect on various evenings during the year,” Graham explains.

The group has found that the more they do, the more momentum they build. In 2015, they set themselves a

Leeds Teaching Hospitals Trust get their cheque

A £16,000 donation to a local hospital for IBD services is just the latest chapter in the Leeds group’s phenomenal success story

Raising money at Leeds Arena last year

‘10K target’ which they subsequently smashed.

Their £16,000 donation to Leeds Teaching Hospitals Trust will fund valuable facilities for the local Inflammatory Bowel Disease (IBD) community – “two consultation rooms, space for administration and IT, space for group sessions … patients will be able to

YOU’VE GOT TO KEEP THE MESSAGE AT THE FOREFRONT

telephone these clinics and get one-to-one sessions if they can’t make it in.”

They also raised £5,000 for national research.

Graham is modest about his role leading the group, emphasising the tremendous effort of so many volunteers.

“What I’ve tried to do is show the art of the possible.

That possibility needs time, focus, commitment, energy and a good team spirit. You need leadership and I think I’ve brought that, but you need all of those things. It’s really good to belong to this group, and there’s a strong sense of perseverance.”

Besides fundraising, the group has made a huge impact raising awareness in the area, working with Leeds City Council and schools.

They also worked with the council to extend the Can’t Wait card scheme.

“The more you build up awareness in a city and the more you are driving that message and looking for community supporters, the bigger a network you grow. I send out our newsletter to community supporters, businesses … we have a big mailing list and it keeps them aware of what’s happening. I describe it as ‘keeping the paint red’,” Graham explains.

“You’ve got to keep the

LEADING LIGHT Graham Bell became chairman of the Leeds group five years ago.

His involvement in Crohn’s and Colitis UK began when his consultant convinced him to join a patient panel. Of his own IBD he says: “I was in denial for many years. Getting over the fact that you have the condition, then what the pathway is to at least get you back on an even keel, are important.”

Services should be “tailored to what people need”, and that it varies very much from person to person. For him, “strong family support” and reassurance from doctors are key.

message at the forefront so that people are aware of opportunities to contribute.”

The momentum that Graham has nurtured over the past five years as chair is sure to spell a great future for the Leeds group and, in turn, the area’s wider IBD community.

FOR MORE INFORMATION on the Leeds group, visit www. crohnsandcolitis.org.uk/leeds CONNECT • SUMMER 2016 • 31

YOUR VOICE

OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

READ ALL ABOUT IT

TRY THESE NEW-EDITION PUBLICATIONS TO HELP MAKE LIFE WITH IBD EASIER BOWEL CANCER Looking at what may increase your risk of bowel cancer if you have Inflammatory Bowel Disease (IBD), and how you can reduce this risk.

PLAY FOR TODAY South Essex volunteer team’s Diane Harman was inspired to write a play about Inflammatory Bowel Disease (IBD) by her own experience of Crohn’s Disease from a young age, and a passion to raise awareness.

She says: “I decided to channel my love of the arts and theatre through writing with the hope of making a difference and to help others whose lives have been affected

by IBD.” The play, Room 5, has “toilet humour in abundance” and got great feedback from the local community, which inspired a new action plan – to record a performance and make it available on DVD. South Essex is keen to share the Room 5 recording and asks those interested to get in touch.

FOR MORE INFORMATION se@groups.crohnsandcolitis. org.uk

32 • SUMMER 2016 • CONNECT

MANAGING BLOATING AND WIND People with IBD often report feeling bloated. Many also worry about excess gas and its effects, such as tummy gurgles and passing flatus (breaking wind). This information sheet answers common queries about bloating and wind.

AZATHIOPRINE AND MERCAPTOPURINE Answering common questions you may have if you have been given azathioprine or mercaptopurine to treat your IBD.

WHY HAVE I BEEN GIVEN METHOTREXATE? INFORMATION FOR TEENS AND YOUNG PEOPLE WITH IBD Answering common questions young people may have if they have been prescribed methotrexate.

WHY HAVE I BEEN GIVEN AZATHIOPRINE? INFORMATION FOR TEENS AND YOUNG PEOPLE WITH IBD Answering common questions young people may have if they have been prescribed azathioprine.

THE FOLLOWING PUBLICATIONS HAVE ALSO BEEN AMENDED: • Biological Drugs • Diarrhoea and Constipation

BOWEL CANCER AND IBD

INFORMATION SHEET

INTRODUCTION If you have Ulcerative Colitis Inflammatory Bowel Disease (UC) or Crohn’s Disease (the two main forms of chance of developing bowel – IBD) you might wonder whether you have a greater cancer than the general increased risk for some population. There is an people extensive UC or with Crohn’s with IBD, especially those with longstanding and However, the overall number Disease affecting all or much of the large bowel. known as colorectal cancer) of people with IBD who develop bowel cancer (also checks to see if there are is small. Your IBD team should carry out regular any successfully when detected signs of cancer, since cancer can be treated more early.

This information sheet looks at what may increase have IBD, and how you your risk of bowel cancer can reduce this risk. It if you also describes changes of the bowel that may develop in the lining into cancer, and how these are detected.

WHO IS AT RISK? There are a number of known history of cancer and smoking.risk factors linked to any cancer, including family For people with IBD, there bowel cancer according can be extra risks of to the type of IBD and its location.

Ulcerative Colitis UC affects the lining of the large bowel, which includes the colon and risk of developing bowel rectum. The cancer is linked to three main factors: • How long you have had UC • How much of your large bowel is affected • How severe your inflammation is Research shows that the risk of developing cancer about 8-10 years after the start of IBD symptoms. usually begins to increase diagnosis, which could be much later than when This is not from the date of your your symptoms started.

Your risk of cancer is highest (often referred to as extensive,if the whole of your colon is affected by disease total or pancolitis).

If only the left side of your colon is affected by UC (distal colitis), there is less of developing cancer than for those with total colitis. risk If your UC is limited to the rectum (proctitis), your risk is little or no greater the general population. than for IBD has been recognised as a high risk condition for bowel cancer since 1920s. It is difficult to the say what you have UC, because reports the actual risk of developing bowel cancer is if have varied greatly in this is because studies have differed as to whether their conclusions. Largely, specialist centres (with severe disease) or general patients were recruited from practices (with milder disease).

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Crohn’s & Colitis UK | www.crohn sandcolitis.org.uk

• Children and Young People with IBD: a guide for schools • Fertility and IBD • Food and IBD • Pregnancy and IBD • Travel and IBD • Ulcerative Colitis • Understanding IBD – Ulcerative Colitis and Crohn’s Disease FOR MORE INFORMATION www.crohnsandcolitis.org.uk/ publications

SWEET INSPIRATION Viv Taylor wanted to do “a little good” to celebrate her 50th birthday, and support Crohn’s and Colitis UK. “I lost my mum in 2010.

She had suffered from Ulcerative Colitis for 13 years. I thought raising some money for the charity was a lovely way of having mum celebrate with me too.

“I bought 50 tubes of Smarties and wrapped a Crohn’s and Colitis UK leaflet around each one. I gave them to friends and family and asked them to enjoy the

sweets, then fill the empty tubes with 20p pieces – as many or as few as they could.

I also posted it on Facebook.

The response and kindness were overwhelming.

“We have raised over £600 and the tubes are still coming in, with people buying extra tubes themselves – so thank you to all my friends and family.

They helped my birthday be much more exciting and memorable, and it was lovely Viv Taylor’s to help such a worthy cause smart idea has in memory of my mum.” raised hundreds

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

PROFESSOR CHRIS PROBERT Professor of gastroenterology at the University of LIverpool

HOLIDAY FEARS

Flying with IBD can be worrying

Q

“I have Inflammatory Bowel Disease (IBD) and am flying on holiday, but am concerned about the flight. Is it okay for me to take Imodium just for the duration of the flight, or is this not ever a good idea for people with IBD?” DR HAWTHORNE SAYS

The main risk of using loperamide is in patients with active disease. Loperamide (Imodium) works by slowing down gut motility, so allowing more time for the absorption of water and salts from the gut into the body. If the disease is very active, the risk is of developing distension of the bowel which can lead to perforation, a medical emergency.

However, if the disease is quiescent, there is no reason loperamide cannot be used. The most common complication is colicky abdominal pain and bloating of the abdomen. It has no effect on the inflammation of active IBD, so is not actually treating the problem, just reducing bowel frequency.

IMPROVING SYMPTOMS

Q

“I have been having Ulcerative Colitis (UC) symptoms such as blood and mucus for several months, and have a colonoscopy booked.

However, my symptoms have got better recently.

Will UC still show up on the scope even if my symptoms have stopped?”

SHUTTERSTOCK

PROFESSOR RAMPTON SAYS

Try to keep appointments

This patient’s symptoms are most likely to have been due to UC, particularly just affecting the rectum – ‘proctitis’ – if there was no diarrhoea. Other possible causes include an infection, a prolapse of the lining of the bowel and polyps. If Colitis is the cause, there will probably still be signs of inflammation

visible down the scope, and on microscopic examination of biopsies. Similarly, any mucosal prolapse or polyps will still be visible down the scope even though the symptoms are better. If the problem was an infection there might, however, be no abnormalities still visible.

It is therefore worth the patient attending for the examination even if he or she is now better.

IBD AND FAMILIES

Q

“I have recently been diagnosed with Crohn’s Disease, but my brother and sister have UC. Why do I have a different form of IBD to my family members?”

PROFESSOR PROBERT SAYS

We recognise that in some families there is a strong

heritable element to IBD and there may be Crohn’s or UC in several members over several generations.

It is noteworthy that identical twins with IBD generally have the same form – either Crohn’s or UC. However, in studies of nonidentical twins this is much less strong – one twin might have Crohn’s and the other UC. We also know that more than 200 genes contribute to the risk of IBD: some are risk factors for Crohn’s, some for UC and some for both.

There are genetic reasons to expect some families to have cases of UC and Crohn’s, and this is actually what is seen.

So, while in this family UC appears to dominate, having a case of Crohn’s is not totally unexpected.

CONNECT • SUMMER 2016 • 33

MY LIFE

‘MAINTAINING A HEALTHY LIFESTYLE REALLY HELPS’ Outdoor adventure filmmaker Euan Ryan is used to climbing great heights but his diagnosis presented him with new challenges to tackle I was diagnosed with Crohn’s Disease when I was 16. My symptoms came to a head when I was studying for my Highers and I had to take a lot of time off school. I didn’t fully realise the severity of my condition until painful stomach cramps left me unable to move.

After being referred to a gastroenterology specialist for testing and a colonoscopy, I was put on a course of heavy-duty steroids and medications. I also tried anti-inflammatory medications but they just made my symptoms worse.

Being diagnosed with a lifelong chronic condition at 16 was quite daunting.

Thankfully my family were extremely supportive and, once I found the medication that suited me, things started to improve.

Whenever I tell consultants that I’m an outdoor adventure climber and videographer, they immediately get this worried look on their face.

I came across climbing at a birthday party when I was eight years old and it really clicked with me. It offers a real personal challenge and is a great workout too. After I left school I decided to marry my passions for climbing, 34 • SUMMER 2016 • CONNECT

Crohn’s is something that I’ve had to adapt to in my everyday life and I strive to maintain a positive outlook.

There’s always someone who is struggling more than you, so it’s important to maintain a sense of perspective. I know that I’m lucky to be able to continue my active lifestyle as other people find it hugely challenging because they’re completely fatigued.

IF YOU HAVE A PASSION THAT’S BEEN AFFECTED BY A DIAGNOSIS, IT’S IMPORTANT TO RETURN TO IT AS OFTEN AS YOU CAN adventuring and filmmaking to form my business, Finalcrux Films.

Crohn’s can leave you feeling fatigued and for that to happen in a remote environment would be dangerous. However, as I can somewhat control my symptoms, I feel that maintaining a healthy lifestyle really helps.

My climbing partners know that I have Crohn’s and they understand completely.

I’m grateful that I’ve got such a great support network. Having a condition such as Crohn’s is a

sensitive issue and can be difficult to talk about, so having a mutual understanding with those around you is exactly what you want.

I am highly aware that my Crohn’s could get worse and lead to me needing a colostomy bag. Right now, I need to be thankful that my condition hasn’t reached that stage yet.

My consultants constantly remind me that I need to eat properly and really take care of myself to stay well.

When I initially returned to climbing, I had to build myself up slowly.

If you have a passion that’s been affected by a diagnosis, you should try to return to it as often as you can. This can help you cope with your condition, and give you back a sense of routine and normality.

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

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

ARE YOU INVOLVED WITH YOUR LOCAL GROUP?

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 www.crohnsandcolitis.org.uk/get-involved/volunteering/local-group