Connect Spring 2017

CLOSE FOR COMFORT: RELATIONSHIPS AND IBD

FACING FLARE-UPS AT WORK P24

CONNECT Spring 2017 / No 86 / crohnsandcolitis.org.uk

Your membership magazine

SHAPE IBD CARE WITH YOUR STATS

EIGHT CITIES GET SET FOR WALK IT P6

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LIFE IN THE FAST LANE HOW OLYMPIC SWIMMER

SIOBHAN-MARIE O’CONNOR STORMED TO SILVER IN RIO

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E VE AT SA D E TH

Celebrate our achievements at the

ANNUAL GENERAL MEETING Attend in person or watch online

• Hear about our plans for the future, based on a sharper vision and mission supported by our restated values • Take part in decision making on a modern constitution to meet the demands of today

VENUE

St Albans office or join us online

DATE

Saturday 2 September

TIME 11.30am-12.45pm FOLLOWED BY BUFFET LUNCH

Register your interest in attending by emailing meetings@crohnsandcolitis.org.uk with AGM in the subject line. Please tell us your name and postcode, or membership number if known. By doing this you will be agreeing to communications on membership matters by email. Where you have elected not to receive information about campaigns or more general work this will still apply. Agreeing to receive information via email reduces our postage expenditure and helps us work more cost effectively.

A full AGM programme and formal notice of meeting will be published on our website at crohnsandcolitis. org.uk in July 2017, including all resolutions relating to our constitution. Registration is required in order to vote online or in person at the AGM, and details of how to do this will be on our website.

A proxy voting form will be available from our offices or online to those who are unable to attend. If you would prefer to receive all registration and AGM details by post, please contact Carrie Lynch on 01727 734495 or by writing to Crohn’s and Colitis UK AGM, 45 Grosvenor Road, St Albans, Herts AL1 3AW.

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WELCOME

OUR CONTRIBUTORS IN THIS ISSUE

SIAN PHILLIPS The contributing editor of Connect speaks to WALK IT 2016 participant Sarah Jane Lamond.

See page 6.

PENNIE TAYLOR The journalist and health communications expert talks to young fundraiser Jenny Cook.

See page 34.

MATTHEW HORWOOD

GEMMA BRIGGS The feature writer meets Olympic swimmer Siobhan-Marie O’Connor. See page 16.

JULIE PENFOLD The freelance health and wellbeing journalist speaks to a young couple who both have IBD. See page 20.

‘AWARENESS RAISED BY WALK IT HAS OPENED DOORS’

As lead volunteer at Swansea’s WALK IT in 2016, Jamie Bowen witnessed the great impact the event had in improving IBD recognition in Wales

M

y second bowel resection in 2000 was a turning point – I went into remission from Crohn’s Disease and it set me on a mission.

Once I felt healthier, I decided to set myself challenges regularly and got involved in campaigning, awareness and fundraising for Crohn’s and Colitis UK. In 2015, off our own backs, the local group put on a sponsored walk in Swansea. Only 50 people took part, but we were happy with the result.

The following year, Swansea hosted an official WALK IT event and attracted 234 participants thanks to the increased publicity and support. It was great to see everyone in their purple T-shirts, and to have passers-by stop and look. If you’re thinking about getting involved, I urge you not to underestimate the impact it can have.

Members of the Welsh Assembly were invited, and we were delighted that Rebecca Evans AM came along. She has since become minister for social services and public health

– which is great news for Crohn’s and Colitis UK. It’s opened doors for the charity to have its voice heard by politicians.

I’m really passionate about campaigning and making sure Inflammatory Bowel Disease is high on the agenda of those in positions of power. It’s great to see that the invisible illness toilet sign campaign is getting a lot of support. Locally, I’m pushing for Swansea City Council to formally recognise the Can’t Wait card, which could also make a massive difference for so many people in their day-to-day lives.

I look forward to reprising my role as lead volunteer at WALK IT in Swansea this summer, and can’t wait to see lots of people there!

Jamie Bowen

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

CONNECT • SPRING 2017 • 3

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FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER

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

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

01727 734465 FUNDRAISING

01727 734485

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

crohnsandcolitis.org.uk

SPRING 2017

CONTENTS

#crohnsandcolitisuk

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

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CONNECT Our address is: Crohn’s and Colitis UK, 45 Grosvenor Road, St Albans, Hertfordshire AL1 3AW Email info@crohnsandcolitis.org.uk Online www.crohnsandcolitis.org.uk Membership and general enquiries 01727 830038 Connect is the magazine for Crohn’s and Colitis UK. Registered charity: England 1117148 Scotland SC038632 Editor Fiona McKinlay fiona.mckinlay@ thinkpublishing.co.uk Editor for Crohn’s and Colitis UK Juliet Chambers Editorial board Juliet Chambers, Dan McLean, Caroline Reed Contributing editor Sian Phillips Medical editor Dr Philip Smith Editorial assistant Jonathan McIntosh Sub-editors Sam Bartlett, Sian Campbell, Kirsty Fortune Designer John Pender

MATTHEW HORWOOD, MIKE WILKINSON, GEORGE ARCHER

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

IT’S DIFFICULT FOR ME TO GET COMFORTABLE WITH SOMEONE NOTEBOOK

FEATURES

6 Streets ahead Supporters gear up for this summer’s WALK IT 10 Toilet sign campaign gains momentum More supermarkets set to install invisible illness signs

16 Swimming success Olympic silver medallist Siobhan-Marie O’Connor on how Ulcerative Colitis affects her training regime and why her medal means so much 20 “You don’t feel like the sexiest person alive after a flare-up” Navigating romantic relationships while living with IBD can pose extra challenges, find Katie Cheema and Mat Neill 24 Back to business Community champion Steven Sharp on the importance of having an understanding boss

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YOUR VOICE 28 Triathlon of triumph Fundraisers run, row and cycle from Marble Arch to the Arc de Triomphe 33 Just ask Experts answer your queries 34 My life Fundraiser Jenny Cook talks about winning awards and setting up office in her garden

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YOU CAN GET INVOLVED JOIN US AT OUR AGM

Please see the inside front page

Help us shape our FUTURE together

CONNECT • SPRING 2017 • 5

NOTE BOOK NEWS FROM AROUND THE UK

STREETS AHEAD

MORE THAN 3,250 PEOPLE HELPED RAISE £308,000 FOR CROHN’S AND COLITIS UK IN 2016 … BY WALKING. THIS YEAR’S EVENTS WILL BE BIGGER AND BETTER, TAKING IN EIGHT CITIES DURING JUNE AND JULY

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arah Jane Lamond, 31, from North Ayrshire participated in the Edinburgh 5k WALK IT event last year.

Sarah Jane was diagnosed with Crohn’s Disease in July 2015. Her mother also had the condition, and sadly passed away aged 40 due to complications that resulted in a pelvic abscess in 2000.

Along with her husband Chris and daughter Isla Mae, four, Sarah Jane was accompanied on the walk by her sister-in-law Shauna Lamond, and friends Andrew and Claire McKay and their daughters, Holly, six, and Erin, three.

“Everyone was in very high spirits, with participants of all ages taking part in the walk and raising awareness for the charity. The kids had a bouncy castle and face painting, which was great fun in the lead-up to the

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walk,” says Sarah Jane.

“Walking through the city itself was electrifying, and the number of people who looked at the T-shirts and spoke with us on our way meant there was a great amount of support for all the walkers.”

Sarah Jane says even the three young girls managed to complete the walk without too much stalling “but an ice cream along the way helped!”

As a team, the families managed to raise £500 for Crohn’s and Colitis UK. “It was considerably more

Sarah Jane shows off her medal from WALK IT 2016

WHAT YOU NEED TO KNOW: WALK IT 2017 TAKES PLACE IN EIGHT CITIES ACROSS THE UK Join the event in Plymouth on Saturday 6 May; Manchester on Saturday 20 May; Newcastle on

Saturday 27 May; London on Saturday 10 June; Swansea on Saturday 24 June; Edinburgh on Sunday 2 July,

Birmingham on Saturday 8 July and Bristol on Saturday 15 July.

See the leaflet enclosed with your

copy of Connect for details on registration, visit crohnsandcolitis. org.uk/walkit or call 01727 734485

VOLUNTEER WITH US @ WALK IT YOU CAN MAKE THE DIFFERENCE AT THIS YEAR’S EVENT

SIMON WILLIAMS

Sarah Jane Lamond takes part in the Edinburgh event last year with friends and family

than we expected,” says Sarah Jane. “We were all exceedingly grateful for the generosity of friends and family.”

Sarah Jane explains her reasons for doing the walk: “I wanted to raise awareness of both of the conditions, and support the charity and others who may not have been able to participate.”

She was also celebrating her own better health. “In July 2015 I could barely walk due to a mass on my right side,” she says. “I was admitted to hospital for a week. I had a CT scan, steroids, antibiotics and a blood transfusion. The results showed septicaemia and Crohn’s Disease.

“I came home and tried to just get on with the day-to-day business of looking after my daughter, aged three, and working as a self-employed mobile massage therapist while on

WALKING THROUGH THE CITY ITSELF WAS ELECTRIFYING 25 pills a day. However, deep down, I knew I was nowhere near being well.”

Sarah Jane says that, after much deliberation, she took her consultant’s advice to have a right hemicolectomy on 14 October 2015.

“I was lucky I did make that choice, as it saved my life. I had a major blockage, had perforated my bowel and my bowel had also attached itself to my abdomen wall,” she says.

“Well, to say it was a scary time is an understatement, but it was the best decision I have ever made. After 12 weeks off work I returned and I’m

busier than ever. I have a much better quality of life, even managing a holiday to Spain in Easter last year.

From 25 pills a day last July I’m now on just one immunosuppressant a day.

“I know the real effects this disease can have on an individual and a family.”

For others considering joining a WALK IT event in 2017, Sarah Jane says: “Please come along and show your support. It’s a great day out for all the family. Take your friends and family along to support you and the great charity.

“Having my friends’ and family’s support since my diagnosis has got me through my journey.

They’ve not only supported me physically after my operation and on the WALK IT event, but mentally too.”

WALK IT is a great opportunity to give back to the IBD community, and what better way than to volunteer at the event in your area?

We’re looking for enthusiastic supporters, families and friends to make these events a great success, and registering and cheering on walkers or marshalling the route are just a couple of ways you can help create a fantastic festival atmosphere.

If you walked last year, why not join our team of volunteers this time around?

Volunteers are required for roles including briefing and set-up, and all the way through to the event finish.

Please sign up at crohnsandcolitis.org.uk/ walkit to register your interest.

MORE INFORMATION If you have any questions about volunteering at this event, please call 01727 734475

FIND OUT MORE AND REGISTER at crohnsandcolitis.org.uk/walkit CONNECT • SPRING 2017 • 7

NOTE BOOK

CAMP WELCOMES FAMILIES AFFECTED BY IBD BOOK NOW FOR ACTIVITY WEEKEND IN SEPTEMBER

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rohn’s and Colitis UK has teamed up with children’s charity Over The Wall to offer an Inflammatory Bowel Disease camp at Liddington PGL centre in Wiltshire for children with IBD and their families. There will be 65 spaces available for around 16 families at the weekend camp to be held from 15–17 September.

The weekend will be an opportunity for children with IBD, aged 17 or under, to enjoy lots of fun activities together with their family.

Liddington PGL offers a host of sports and adventurous activities, from abseiling to canoeing, and the camp will be a chance to try something new in a safe environment. A team of medical professionals will be on hand, as well as staff and volunteers from Over The Wall and Crohn’s and Colitis UK, to make sure everyone has a great time.

Children with IBD can enjoy a range of activities at the camp in September

Elliot James, Crohn’s and Colitis UK young people and families development officer, said: “It’s a great way to build everyone’s confidence and will allow children to grow and share experiences in a fun and safe way.”

FOR MORE INFORMATION For details and booking, see crohnsandcolitis.org.uk/events

JOIN THE FAMILY NETWORK ACTIVITY DAYS PLANNED ACROSS THE UK Crohn’s and Colitis UK’s Family Network volunteers organise and host informal activity days at different locations around England. The days are for children up to the age of 18 who are affected by IBD, and their families, to meet other families and have a go at some fun activities. The group

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is currently planning events in the Midlands, Liverpool and on the south coast, following successful events near Doncaster, Oxford and Milton Keynes last year.

FOR MORE INFORMATION Visit crohnsandcolitis.org.uk/ familynetwork

You might pick up some new dance moves at a Family Network event

IT’S ALL RELATIVE

FAMILY DAYS TO TAKE PLACE IN BIRMINGHAM, GLASGOW AND MILTON KEYNES

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rohn’s and Colitis UK will build on the success of last year’s Family Days held at sporting venues in Liverpool, Leeds and London, with dates to be confirmed nearer the time.

Last year’s Family Days brought together IBD specialist teams from a number of hospitals in each area and expert representatives from Crohn’s and Colitis UK, as well as a number of charities that offer support to people living with IBD including Citizens Advice, the Ileostomy Association, Over The Wall, Healthwatch and Breakaway. There were also information sessions presented by healthcare professionals.

Of course, the Family Days also provided the opportunity for people to meet and talk to others affected by IBD, plus offering plenty of fun things to do for children and the whole family, including craft workshops, face painting, circus skills sessions, some close-up magic and tours of the iconic sporting venues where they were hosted.

Nicola Theodoulou, her husband Tony and their children Andrea, 16, Anastasia, 11, and Theo, eight, attended the Family Day at Tottenham Hotspur

The Theodoulou family enjoy the event at Tottenham Hotspur’s ground

Football Club last year – “an added bonus for us, as we are Spurs fans”.

Theo was diagnosed with Crohn’s Disease in April 2016 when he was seven.

“There was lots of information available on the day, with so many helpful and knowledgeable people to answer any questions we had about Crohn’s,” says Nicola. “Our fabulous IBD nurse Vicki was there, and our great consultants, Dr Furman and Dr Crespi.

“As Theo was diagnosed in 2016, it was reassuring to meet people who understood about Crohn’s and for our son to meet people with IBD. We made a lot of new friends, especially a lovely family whose child has Crohn’s too.”

Nicola says it was wonderful to meet “so many lovely, friendly people on the day”. She says the children particularly enjoyed the face painting and the tour of the football club.

“Crohn’s and Colitis UK is such a brilliant organisation and very informative. I’m a member of the organisation and get Connect, which is such a great read.”

PARENT’S GUIDE UPDATED

EXPERT ADVICE FOR FAMILIES For the parents or carers of a child with IBD, the updated IBD in Children: A Parent’s Guide, produced by Crohn’s and Colitis UK, is a good source of information.

Written mainly for parents of children under 16 with IBD, it has been produced in consultation with patients, medical advisers and other health and associated professionals. It includes information about Crohn’s Disease and Ulcerative Colitis, and the various symptoms your child might be experiencing, the tests or treatment they might need, and how to help your child manage day-to-day life with their condition.

DOWNLOAD THE GUIDE at crohnsandcolitis.org.uk/publications

FOR MORE INFORMATION Details of forthcoming Family Days will be listed at crohnsandcolitis.org.uk/events

IT WAS REASSURING TO MEET PEOPLE WHO UNDERSTOOD ABOUT CROHN’S DISEASE CONNECT • SPRING 2017 • 9

NOTE BOOK

TOILET SIGN CAMPAIGN GAINS MOMENTUM

MORE SUPERMARKET CHAINS PLEDGE TO INTRODUCE INVISIBLE ILLNESS SIGNAGE

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n email campaign launched by Crohn’s and Colitis UK in 2016 has persuaded the UK’s supermarket giants to install new signs on their accessible toilets to acknowledge that not every disability is visible.

Nearly 19,000 emails have been sent to CEOs of leading supermarkets in the UK, with Asda,

Morrisons and Tesco all now on board.

Access to toilets when away from home was the number-one issue raised by Crohn’s and Colitis UK members in a survey that asked what would have an impact on their lives, with 86% saying improved access was needed.

According to a Colostomy Association survey on the quality of life of ostomates Community champion Sam Cleasby is among those speaking out

living in the UK, 30% had been challenged for using an accessible toilet. The Crohn’s and Colitis UK campaign seeks to raise awareness of IBD as a hidden disability.

Dan McLean, director of marketing, communications and membership at Crohn’s and Colitis UK, said: “This is a great step towards reducing stigma and raising awareness that not every disability is visible and everyone is grateful to the supermarkets for making these changes so swiftly.

People living with IBD can be very disadvantaged by the impact of their condition. The experience or fear of unpredictable incontinence is undermining to a person’s confidence and self-esteem, and can lead in some cases to the person affected becoming too anxious to leave their home.”

Sam Cleasby, 35, from Sheffield, has a permanent ostomy bag and wrote a blog post in 2015 that went viral after facing criticism from a fellow shopper for using an accessible toilet. Sam who is a community champion for Crohn’s and Colitis UK, said: “There are times when going to the supermarket feels more like climbing

ACCESS TO TOILETS WHEN AWAY FROM HOME IS A MAJOR ISSUE

FUNDRAISING AWARD OPEN FOR ENTRIES PRIZE HONOURS ALEX DEMAIN

TIMM CLEASBY / THE PICTURE FOUNDRY, DEREK PHILLIPS / ALAMY STOCK PHOTO

Anne Main MP helps with an unveiling at Morrisons and, inset, the new signage at Tesco

Mount Everest. I have Ulcerative Colitis and a permanent ostomy bag, which I sometimes have to change while out and about.

Yet to look at me, you wouldn’t be able to tell that I had any extra needs.

“When I called out the people who tutted, laughed and judged me for using an accessible toilet on my blog, So Bad Ass, I never expected the enormous response I received from people who had faced the same issues: my story was read two million times and was shared all over the world.

It was heartbreaking to read so many similar stories from people with all manner of ‘invisible disabilities’,

such as dementia, cancer, Tourette’s, and those with ostomy bags or other toilet needs whose lives were being made more difficult by the judgment and ignorance of others.

“To know that supermarkets are making a positive change in signage to alert the public that not all disabilities are visible simply means the world. It means the next time I am facing my Mount Everest moment, those around me might just have learned enough to stop judging and know that sometimes there is more than meets the eye.”

The second annual Alex Demain Young Fundraiser of the Year Award is now open for entries to celebrate the hard work of young people who have made a significant contribution fundraising for Crohn’s and Colitis UK. The award has two categories: under-16s who have raised at least £250, and those aged 16–29 who have raised £1,000 or more.

Last year’s winners were Emma Lister, 21, who raised £7,555.82 by swimming the English Channel in support of her sister Katie, who lives with IBD; and Erin Burnham, nine, who raised £1,537.82 through activities including selling milkshakes at school after completing a six-week Modulen liquid diet.

Erin Burnham with her 2016 award

Do you know someone who fits the bill? We would love to hear from you.

The award is in memory of Alex Demain, who died aged 29 after joining Crohn’s and Colitis UK in 2010, and was a much-admired member of staff.

FOR MORE INFORMATION: crohnsandcolitis.org.uk/ alexdemain

VISIT crohnsandcolitis.org.uk/ get-involved/campaigning

‘CAN’T WAIT’ CARD UPDATED New members and those who renew will now receive a redesigned membership card, complete with its ‘Can’t Wait’ message.

The two-sided card is designed to help you get access to toilets without embarrassment or confusion.

Small enough to be discreetly tucked away in a purse or wallet, the card is available in different languages for travellers.

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NOTE BOOK

STUDY EXAMINES IMPACT OF IBD ON YOUNG PEOPLE’S MENTAL HEALTH

REPORT RECOMMENDS WAYS TO IMPROVE LIVES OF 16 TO 21-YEAR-OLDS WITH CROHN’S DISEASE OR ULCERATIVE COLITIS

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nxiety and depression are prevalent in young people with IBD, with young women in particular reporting a lower quality of life, and more frequent and higher levels of anxiety than their male counterparts.

These were some of the findings of ‘Adolescents with Inflammatory Bowel Disease: Their relationship with their disease, identity and illness perceptions’ – a University of Sheffield project funded by Crohn’s and Colitis UK. Researchers contacted people aged 16–21 to hear how they felt about living with IBD at a time when 12 • SPRING 2017 • CONNECT

they had to negotiate many other challenges such as education, relationships, employment and leaving home.

These people were also experiencing adolescence when their IBD care would move (‘transition’) from child into adult health services.

According to the report: “[Transition] can be problematic as, in adult services, there is less multidisciplinary input and psychological support, and the focus is more on the individual rather than the family, where the young person begins to take responsibility for the management of their IBD.”

The study also found that young women believed the timeline of IBD to be longer, understood their IBD less, perceived their symptoms to be more “cyclical”, and their feelings about their IBD were more negative than those of their male counterparts.

Additionally, young people who described themselves in relapse reported a lower quality of life and had a higher

YOUNG PEOPLE STRUGGLE TO HAVE THEIR IBD UNDERSTOOD

depression score than those in remission.

“Young people who struggle to have their IBD understood value the support of friends and family, and are self-critical.

But we also found they were resilient and strong young people,” the report stated.

“In terms of transitioning to adult services, participants reported before they transitioned that it felt like they were growing up and taking responsibility for their own IBD, but that they had some worries about losing the relationships they had established with nurses and doctors. [Those] who had already moved to adult services felt like it was their turn to take control of their IBD and that they could settle into adult services.”

What would help?

The report recommended that young people with IBD should be screened and monitored for the risk of developing depression and

RESEARCH UPDATES

ISM / SCIENCE PHOTO LIBRARY, SHUTTERSTOCK

RECENT PROJECTS FUNDED BY CROHN’S AND COLITIS UK

anxiety, and that there should be mechanisms in place to intervene early.

The researchers felt there was a need “to help young people develop ways of coping with their disease, fearing the possible consequences less, understanding IBD better, feeling more positive about their IBD and fostering self-compassion”.

Further work is needed to examine why young women are at higher risk of suffering increased levels of depression and anxiety, and a poorer quality of life.

This research was led

by Dr Georgina Rowse, senior lecturer in the clinical psychology unit at the University of Sheffield, and Dr Alenka Brooks, specialist registrar in gastroenterology at Sheffield Teaching Hospitals NHS Foundation Trust.

FOR MORE INFORMATION crohnsandcolitis.org.uk/ adolescentswithibd

NDERSTANDING U GRANULOMA FORMATION IN CROHN’S DISEASE AND MONOGENIC INFLAMMATORY BOWEL DISEASE One of the histological features of Crohn’s Disease is the presence of granulomas in the lining of the bowel wall, which are formed when immune cells collect around a foreign substance (for example, bacteria), with the aim of sealing it off from the rest of the bowel. These tend to be found in younger patients, and are often associated with more aggressive disease and more frequent relapses.

Holm Uhlig at Nuffield Department of Medicine, the University of Oxford, found that the presence of bacteria is definitively linked to the formation of these granulomas, and by isolating DNA from the affected cells his team can identify the specific bacteria present.

With this information they can undertake further research looking at the role of these bacteria and potential treatments to stop granuloma formation.

LIVING WITH CROHN’S DISEASE: EXPECTATIONS, EXPERIENCES AND DECISION MAKING IN RELATION TO AUTOLOGOUS STEM-CELL TREATMENT This study, undertaken by Dr Joanne Cooper at the University of Nottingham, explored the experiences of 38 people living with severe Crohn’s Disease.

The study concluded that people living with severe Crohn’s Disease found their symptoms were difficult to manage; and that a lack of control over symptoms had a negative impact on their and their family’s/ loved ones’ lives.

Many believed that taking part in the Autologous Stem Cell Transplantation International Crohn’s Disease Trial would be a ‘hopeful opportunity’.

The researchers found that taking part in stem-cell trials was both mentally and physically challenging. They concluded that support and more detailed information should be offered to all participants prior to, during and after this type of trial.

FOR MORE INFORMATION on current research visit crohnsandcolitis. org.uk/research/ projects

PTIMISING THE O RESPONSE TO THIOPURINE THERAPY IN INFLAMMATORY BOWEL DISEASE: A SEARCH FOR BIOMARKERS PREDICTING THIOPURINE HYPERMETHYLATION Headed by Dr Jeremy Sanderson, consultant gastroenterologist at Guy’s and St Thomas’ Hospital in London, this study focused on immunosuppressant drugs such as azathioprine (AZA) and mercaptopurine (6-MP). While these can be very effective treatments, around half of the people with IBD fail to respond to them.

The study confirmed that a process called hypermethylation, which occurs in around a quarter of patients, is an important cause of why treatment with AZA or 6-MP fails for them, and found some genetic differences that could predict whether an individual will fall in to this category.

It also confirmed that it would be useful to have a test to predict hypermethylation before patients even start taking the drugs.

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NOTE BOOK CROHN’S AND COLITIS AWARENESS WEEK HIGHLIGHTS

PURPLE FRIDAY

Purple was the colour du jour on 2 December last year as part of Crohn’s and Colitis Awareness Week 2016. People were encouraged to wear purple to raise awareness of Inflammatory Bowel Disease. The Crohn’s and Colitis UK team, pictured above, made some bold fashion choices.

POSTER MAKER

Crohn’s and Colitis UK also encouraged people to make a Crohn’s, Colitis and Me poster to help make a visual map of their journey with their condition, to share on social media. More than 4,200 posters were made.

TO MAKE YOURS, VISIT crohnsandcolitis.org.uk/ccam 14 • SPRING 2017 • CONNECT

YOUR DATA CAN MAKE A DIFFERENCE THE IBD REGISTRY AND HOW YOUR PARTICIPATION CAN HELP WHAT IS IT? The IBD Registry collects information about Inflammatory Bowel Disease from hospitals across the UK. The aim is that this information will enable hospitals to improve the care of people with Crohn’s and Colitis, and help the NHS design better IBD services.

It will also aid the understanding of how people’s lives are affected

by IBD and support research into Crohn’s and Colitis.

WHY SHOULD I CONSENT TO MY DATA BEING USED? By allowing your data to be collected by the registry you will be helping to shape the future care of people with IBD. HOW SAFE IS MY PERSONAL INFORMATION? If you consent to the use of your data, an NHS-approved data ‘safe haven’ receives the data directly from the

hospital and extracts some of the personal information to make it ‘pseudonymised’ (almost anonymous) before sending it to the IBD Registry.

This means that when your information reaches the registry, you cannot be identified.

In England and Wales the data ‘safe haven’ is NHS Digital (formerly the Health and Social Care Information Centre). Different NHS data ‘safe havens’ are being commissioned for Scotland and Northern Ireland.

WHAT DOES THE IBD REGISTRY DO WITH MY INFORMATION? The information will be analysed by clinicians and statisticians in the registry team. They will use the data to learn more about IBD care in the UK. The team will also be able to learn how IBD affects different people and what treatments and services they

receive. This will increase understanding of the illness and help improve the quality of care for people with IBD. The IBD Registry may also allow approved researchers to analyse the data under strict conditions.

Any reports that are published will be available at www.ibdregistry.org.uk WHAT DO I NEED TO DO IF I’M HAPPY FOR MY DATA TO BE USED

BY THE IBD REGISTRY? You will need to give consent for your data to be used.

When your hospital starts participating in the IBD Registry you should be sent or given a patientinformation leaflet to read and, if you are content to proceed, there will be a consent form that you can sign.

FOR MORE INFORMATION see www.ibdregistry.org.uk

FLOWER POWER SPONSORED GARDEN TO RAISE AWARENESS AT MAJOR EVENT

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hen some people retire, they take it easy.

Not so for former education consultant Denise Shields. She is busy spending her first year of retirement creating an exciting 77 sq m garden in support of Crohn’s and Colitis UK for the Royal Horticultural Society (RHS) Flower Show Tatton Park.

“I’m a passionate gardener, and I had this bonkers idea that I’d like to build a garden and do it for the charity,” says Denise.

“My son Callum was diagnosed with Crohn’s at 13. He was a very poorly boy, but with the support of his fantastic consultant at the Countess of Chester, Professor Terence Wardle,

Denise and Callum are proud to be involved in the charity

WIN RHS FLOWER SHOW TICKETS Want to see the finished masterpiece? Crohn’s and Colitis UK has a pair of tickets to the RHS Flower Show Tatton Park from 20-23 July 2017 to give away to one lucky reader.

Visit crohnsandcolitis.org.uk/flowershow to enter

he sailed along for 10 years,” says Denise. “But then at Christmas in 2012, aged 23, he had a massive relapse and nearly died.”

Callum finally went into remission two years later

THE GARDEN’S INSPIRATION IS CALLUM’S BRAVERY AND RESILIENCE

and managed to achieve a first-class honours degree in sport, rehabilitation, conditioning and massage at Cardiff Metropolitan University. “I am very happy to be the inspiration for the garden design, and proud of my mum’s determination to make the project a success,” says Callum.

Denise is working non-stop on the garden

WE’RE HERE TO HELP

SHUTTERSTOCK

CROHN’S AND COLITIS UK HAS MADE CHANGES TO ITS GRANTS SCHEME More financial support is now available through Crohn’s and Colitis UK’s grants scheme, which is open to people on a low income with a need relating to their IBD. Awards are made at the grant panel’s discretion.

The upper limit for personal grants has increased from £300 to £500 This grant can be used for individual items such as a washing machine, beds and bedding, or new clothing.

which is inspired by the bravery and resilience shown by Callum. She has the support of family and friends as well as garden designers Rory Tompsett and Peter Hulland of Actual Landscapes (above left).

Around £100,000 of donations in kind has been secured from various sponsors to build the garden, she says. “The charity will benefit, as much of the garden will be sold.

I’ve also persuaded sculptors Nicholas Romeril and Simon O’Rouke to make a sculpture each for the garden, which we will also sell.”

FOR MORE INFORMATION on the RHS, visit www.rhs.org.uk

The education and vocational grant is now available to people of all ages The upper limit for this grant has been increased from £500 to £1,000 and can be used to cover costs such as course materials, tuition fees, additional costs of en-suite accommodation, travel passes or retraining.

FOR MORE INFORMATION crohnsandcolitis.org.uk/grants

CONNECT • SPRING 2017 • 15

MAKING A SPLASH Siobhan-Marie O’Connor dreamt of Olympic glory.

Flare-ups affected her training schedule before Rio 2016, but couldn’t stop her bringing home a medal

S

WORDS GEMMA BRIGGS PHOTOGRAPHS MATTHEW HORWOOD

iobhan-Marie O’Connor was a mere 16 years old when she competed in the 2012 London Olympics. It would be an incredible feat for any athlete that age, but the swimmer had an even bigger pressure than her youth. Undiagnosed, she was battling Ulcerative Colitis, and says it has never been worse than it was that summer. That this peppy swimmer from Bath went on to win silver at last year’s Rio Games – still only aged 20 – is testament to her uncommon determination.

“I sat down with my coach at the beginning of 2016 and set some goals,” she tells Connect. “I believed that if I had a good year, then winning a medal at Rio would not be unrealistic.

But the Olympics is the pinnacle of sport – so different to any other event – and many weird things happen. I knew it was what I wanted, but I had no idea how the Games would go.”

16 • SPRING 2017 • CONNECT

It proved to be that early experience in the London Games, where she came 21st while battling crippling stomach problems, that was key to her claiming second place in Rio’s 200m individual medley, smashing the British record and missing out on gold by just 0.3 seconds.

“I had not been diagnosed, but I was so poorly in London,” SiobhanMarie recalls. “It really was at its worst. I look back and wonder how I made the team. I think it was because I was so focused on getting in that I did not let anything stop me.

“Having the experience of London 2012 taught me what to expect when I got to Brazil last year. The hype is so different to any other competition, plus there’s the village life and the expectation. It can be life changing, but with that comes pressure. I was competing in 2012, but above that I was watching, and I learnt so much.

It definitely set me up for Rio.”

I WAS SO POORLY IN LONDON. I LOOK BACK AND WONDER HOW I MADE THE TEAM

Siobhan-Marie first began dreaming of the Olympics when she started swimming aged seven, her parents keen that she learnt to be safe and confident in the water. Having soon joined a local club, the sport quickly became an important part of her life, with her brother and parents fully supportive. “Without them, for so many reasons, I just could not have done it,” she says. “My mum used to be in the car all day ferrying my brother and I around, and she never complained or questioned. My parents just wanted to support me and my brother, and I’m very grateful for that.”

The diagnosis of Ulcerative Colitis came over a year after she first started experiencing symptoms. “I was embarrassed and I told my mum, but neither of us was aware of what the symptoms meant,” she says. “It was not nice. I was going to my GP for random joint pain and eye problems, and it all interlinked.”

Since diagnosis, the condition has been well controlled – after the success in Rio she said that her tummy felt amazing, although it has caused her to miss some important events.

“I remember after the Commonwealth Games in 2014 – the biggest competition I’d done to date – I was pretty stressed and had a

ADAM PRETTY / GETTY IMAGES

Siobhan-Marie can’t train as frequently as many other swimmers

CONNECT • SPRING 2017 • 17

YOU ARE IN A COSTUME SO THERE’S NOWHERE TO HIDE

18 • SPRING 2017 • CONNECT

improve it. I think it’s hard to gain confidence, but the biggest step you can take is to stop comparing yourself to everyone. I used to compare, not just what I could do in the pool metre-wise, but I used to think, ‘I need to look like her’. But you can get over that and become confident in your own skin.”

Living with an IBD ‘always in the background’ nevertheless presents Siobhan-Marie with difficulties that her teammates don’t face. Unable to match their physical strength, she can’t train as frequently or complete as many metres in the pool. She is also susceptible to infection. “It has been

SPORTING SUCCESS AND IBD

l British rower Sir Steve Redgrave, diagnosed with Ulcerative Colitis in 1982, made history by winning gold medals in five consecutive Olympic Games between 1984 and 2000.

l US swimmer Kathleen Baker, 19, won silver in the 100m backstroke at the Rio Games. She was diagnosed with Crohn’s Disease in 2009.

l Ali Jawad is a Crohn’s & Colitis UK ambassador and a Paralympic athlete who won silver in Rio for powerlifting.

He keeps his Crohn’s Disease in check with a strict routine.

ADAM PRETTY / GETTY IMAGES, REUTERS / ALAMY, AFLO CO. LTD. / ALAMY, REUTERS / ALAMY

flare-up,” she explains. “I was due to compete at a European event two weeks later; it was the first time I had two major meetings back to back. I thought I was able to handle it, but I went straight into a training camp and I was really poorly. I decided it wasn’t worth the risk competing.

My coach was pretty annoyed at first, but then understanding.”

Although disappointed, SiobhanMarie has no doubt that returning home to get healthy for the following season was the right decision. The ability to put her health before her swimming is clearly not an easy choice: aside from her drive to succeed, she reveals a simple joy when talking about sport and describes it as ‘a great thing to have in your life’. A self-confessed ‘massive sports fan’, you can follow her tweeting about Bath Rugby or Formula 1, and she is in a relationship with fellow Olympic swimmer Chris Walker-Hebborn.

It is impossible to reach the pinnacle of your sport without having a competitive nature, yet SiobhanMarie firmly refuses to compare herself to other swimmers, whether it is in the number of metres they fit into a training session or the size of their costume. But her feelings about appearing in sponsor photoshoots or on TV screens across the world must surely be complicated by the effects of Ulcerative Colitis?

“It’s definitely hard to have body confidence,” she agrees, “but I think in sport in general there’s a real body confidence issue for women. There is a bigger impact in swimming because you are in a costume so there’s nowhere to hide.

“I used to suffer from eczema when the Colitis was bad; I felt really self-conscious and had light therapy to

Siobhan-Marie collects her medal in Rio

OLYMPICS

I DIDN’T WANT TO TALK ABOUT IT IN CASE THE MEDIA THOUGHT IT WAS AN EXCUSE

managing that and managing the expectations of the coaches,” she adds.

Travel also presents a problem, as a long-haul flight will leave her feeling wiped out. “Some people are absolutely fine with travel, but I really struggle,” she says. “The pressure in the cabin makes my symptoms worse. I have to be more considerate with my body; I can’t push myself hard in training the next day like others can.”

It is a sign of her fortitude that Siobhan-Marie has continued to pursue a career in the pool. She is quick to point out that all sportspeople have difficulties, whether ongoing injuries or chronic conditions, and the key is to work with the problem and make the best of it. For her, this includes maximising sleep and recovery time, as well as working closely with her coach: managing an athlete who has Ulcerative Colitis was a new experience for him, but he is “brilliantly understanding” according to the swimmer.

Learning to talk openly about the condition appears to have been as much a struggle for Siobhan-Marie as for anyone with IBD but, following her Olympic medal, she is glad to have spoken out. “In the lead-up to Rio, I didn’t want to talk about it in case the media thought it was an excuse,” she says. “Whenever sportspeople do not do well, journalists look for a reason.

But it’s been so rewarding since I’ve spoken about it. People go so long without getting a diagnosis because they do not know the symptoms, and we should all be more aware of it.”

Working with Crohn’s and Colitis UK is another way she is hoping to reach out and speak to those who also suffer with an IBD. “It’s such a great charity and I’m really looking forward to developing this relationship,” she says – and there is no doubt her story will inspire many.

Hundreds of people who watched her appearance in the pool at Rio sent her messages on social media, and her response gives a brief moment of insight into where that ferocious resolve comes from. “You carry on trying to push your body so hard and these messages make you think, ‘yes, it is worth doing’.”

CONNECT • SPRING 2017 • 19

‘YOU DON’T

FEEL LIKE THE SEXIEST

PERSON ALIVE AFTER A

FLARE-UP’

NEW RELATIONSHIPS COME WITH EXTRA CHALLENGES WHEN YOU’RE LIVING WITH IBD, AS KATIE AND MAT EXPLAIN WORDS JULIE PENFOLD PHOTOGRAPHS GEORGE ARCHER

20 • AUTUMN 2016 • CONNECT

RELATIONSHIPS

W

hen you have IBD, there are additional considerations that can make entering new relationships daunting. There’s the worry around how much of an impact IBD could have on your relationship and there’s also the question of how you would go about explaining your condition to someone who may have little understanding of IBD. For Katie Cheema, 29, and Mat Neill, 32, uncomfortable conversations about how they are feeling are a thing of the past, as they both have partners who uniquely understand their condition – each other. Katie and Mat have been together for almost two years and met via dating app Tinder.

They quickly discovered within a couple of days of text messaging one another that they had a Crohn’s Disease diagnosis in common. Mat was diagnosed when he was 16, while Katie was diagnosed in 2011. Katie and her family were scared when she received her diagnosis due to the experiences of Katie’s dad, who has a severe form of Crohn’s. He was admitted to hospital to have part of his intestine removed, which

IT’S DIFFICULT FOR ME TO GET COMFORTABLE WITH SOMEONE

CONNECT • SPRING 2017 • 21

RELATIONSHIPS

WE FILL OUR POTS UP ON A SUNDAY AND TAKE OUR MEDICATION TOGETHER resulted in him being placed in a medically induced coma due to the development of peritonitis.

“My first dealings of IBD were through that traumatic experience with my dad,” says Katie. “So, when I was diagnosed, that was all we knew of Crohn’s Disease. I didn’t know it was a disease that can be managed and that it’s something that can be okay to deal with.”

It’s the first relationship that Katie and Mat have had with another person who has IBD. Both say it makes talking about and dealing with flare-ups easier. “We have this shorthand where if one of us is feeling tired or has an upset stomach, we just go ‘I’ve got Crohn’s Disease today’ and we both instantly know what that means,” says Mat. “Having that understanding between us does help massively,” adds Katie.

The common symptoms of IBD – such as extreme tiredness, chronic diarrhoea and painful cramps – can mean sex isn’t the first thing on your mind when you’re in a relationship. In fact, sex could be the last thing you’re considering, as worries about a flare-up occurring overtake every other thought. This has certainly been the case for Mat in past relationships.

“It’s difficult for me to get comfortable with someone,” he says.

“There isn’t that impulsiveness or spontaneity because you can’t suddenly decide to stay overnight, as there are always worries in the back of your mind such as ‘what if I’m ill in the morning?’. Crohn’s does really affect intimacy because you can’t act instinctively. After a flare-up, there’s also the issue that you don’t quite feel clean. You certainly don’t feel like the sexiest person alive.”

22 • SPRING 2017 • CONNECT

Happy couple Katie and Mat relocated to Jakarta in 2016

“You don’t want to be approached sometimes either,” adds Katie. “If you’ve had a bit of a bad flare-up then showered and changed, you feel a little more refreshed and chilled. But you don’t feel comfortable going beyond the snuggling-up stage with someone as all you can think about is how your stomach still hurts.”

Another aspect that Mat finds easier now is eating out and avoiding trigger foods. “There’s such a contrast now in terms of anxiety with Katie,” explains Mat. “It can be difficult to get across to someone who doesn’t have IBD that certain foods can make you unwell. They may think what you

have is just a slightly upset stomach and can’t understand why you won’t give something a try. When you’re in a new relationship, it’s hard to have that dialogue early on, as you can’t really verbalise everything about your condition because there are so many different aspects to it.”

Being open about your symptoms and how IBD can affect you can help your partner recognise the signs and be on hand to help, but it’s not always that easy to talk about.

It’s something Mat knows from personal experience.

“At the start of a past relationship, I’d gone round to my then-girlfriend’s

LET’S TALK ABOUT SEX (AND IBD) It’s not something we always like to talk about, but the potential impact of IBD on sex and relationships is a common concern. ● Symptoms such as diarrhoea, painful cramps, anaemia, poor appetite or problems absorbing nutrients can leave you feeling weak and lacking in energy.

You might find at times you’re feeling too tired for sex. During or following a flare-up you may even feel too tired or too unwell to explain. ● Talking to your partner and letting them know how you feel can be helpful, but it isn’t always

easy for people in good health to understand just how exhausting IBD can be. ● Many couples find having a sense of humour can be a real help.

Seeing the funny side of things can be a welcome relief when life doesn’t quite go to plan at times. ● If you’re having a chat about your condition with a new partner for the first time, try to be clear and concise in your explanations of your illness, and avoid being apologetic.

Further reading at crohnsandcolitis.org. uk/sexualrelationships

IT’S HARD TO HAVE THAT DIALOGUE EARLY ON house to see her,” he recalls. “We were talking in her room upstairs when I needed to use the toilet, which was situated downstairs.

Excruciating cramps suddenly came on and I became ill very quickly.

I couldn’t pretend everything was okay, as I was still in a lot of discomfort, so I ended up leaving without explaining. I think it’s been more a case of how I’ve handled situations with IBD in relationships than how past partners have responded to me having Crohn’s.”

Mat has also experienced episodes of anxiety and depression, and stress is a major trigger for him. He feels his

anxiety and depression can be exacerbated at times by Crohn’s. “I’ve lost jobs because of IBD while I’ve been in a relationship and it can leave you feeling worthless, which in turn can set off anxiety and depression.”

When Katie has a flare-up, this can lead to frightening panic attacks and anxiety. The attacks are usually triggered by the emergence of a new symptom and fear of her condition worsening. Having Mat to talk to and discuss concerns with has helped her to deal with her condition better. She says: “When I go into a panic, my head fills with worst-case scenarios and Mat is really good at helping me

to slow down and better manage my illness. I used to have frequent colds due to low immunity, but I now take a daily zinc supplement and that has made a real difference.”

Making changes together also helps. Katie can sometimes forget to take her IBD medication so the couple now have individual pill pots that highlight whether daily medication has been taken or not. “We fill our pots up on a Sunday and take our medication together so I’m much better with that now,” she says. “Also, if we decide we’re going to cut out a certain food, if it’s causing issues for one of us, for example, then we’ll do that together.”

Additionally, Katie and Mat moved from Kent to Jakarta, Indonesia, in August and credit their move with the good health they’re both currently experiencing. Consuming the plantbased, fruit- and vegetable-focused diet favoured in Jakarta has led to Katie and Mat eating better and consuming fewer of the processed foods and sweet snacks that can make them ill. It also helps that processed foods are more difficult to get hold of there. The change in temperature also means the couple are drinking a lot more water now to stay cool.

What the future may hold is something Katie and Mat have already discussed. They hope to get married and have children, but the issue of whether they would be more likely to have a child who develops IBD isn’t something that is a real cause for concern for them.

“I’ve got Crohn’s, my dad has Crohn’s, my mum has IBS, Mat has Crohn’s and his sister also has Crohn’s – it’s just one of those things,” says Katie. “If it happens, it happens.”

Mat shares a similar viewpoint.

“When I was diagnosed with Crohn’s at 16, my mum was amazing and she had no idea, none of the family did, about my condition,” he says. “You’re going to get instances where your children have conditions or health problems, and you can only equip yourself so much. If our children did have IBD, there’s no one better qualified to support them than us.”

CONNECT • SPRING 2017 • 23

Steven Sharp works for a printer cartridge company in Livingston, Scotland

It can be hard to approach the subject of IBD with a current or potential employer – but being open about it has served Crohn’s and Colitis UK community champion Steven Sharp well WORDS JULIE PENFOLD PHOTOGRAPHS MIKE WILKINSON

BUSINESS

24 • AUTUMN 2016 •2017 CONNECT • CONNECT 24 • SPRING

EMPLOYMENT

F

or Steven Sharp, 26, from Fauldhouse, West Lothian, in Scotland, being upfront about having Crohn’s Disease with employers and colleagues is the norm.

“I’ve been honest about my condition at the interview stage with every job I’ve applied for,” he says. “I’m an open book when it comes to my Crohn’s and I feel fortunate that I’ve only had positive experiences in my working life. I sometimes wonder if my employment experiences would have been different if I had chosen not to be so honest.”

Steven was diagnosed with Crohn’s Disease when he was 12 and had to have emergency ileostomy surgery at the age of 17.

He admits living with IBD through his late teens and early 20s did cause some upheaval with his career aims.

After getting his head around having a stoma at 17, Steven required further surgery when he was 20 and 22. This meant he could only work at best on a short-term basis as his deteriorating health took priority. At worst, he was forced to stop working altogether.

“At that age, you’re really looking to start to make a career for yourself and that’s something I wasn’t really able to do,” he explains. “I was recently visiting my gran [who sadly died in December] in hospital and she was being cared for by nurses who were actually people I went to high school with. That really made me think about how my life was essentially put on hold at that time because of IBD.” He is keen to develop a successful career in sales and administration, and enjoys working in an office as part of a team. Steven is employed by Infotone Imaging Supplies as a customer account manager. He is part of a small sales team based at the company’s Livingston office. Steven is happy at Infotone and has a firm eye on promotion within the company.

Being able to talk about his condition at work and knowing his managers and colleagues have an

CONNECT • SPRING 2017 • 25

EMPLOYMENT understanding of how IBD affects him is important to Steven.

“I don’t want to be employed as a number in the workplace – I want to be employed as a person,” he says.

“Having Crohn’s is a massive part of my life and I don’t want to hide it.

If I have to dash to the toilet because of an issue with my stoma or if I become unwell, I want to know there

won’t be an environment of all eyes on me when I return. Not being judged or made to feel awkward by your employers or colleagues makes such a difference.”

The support Steven receives from management and colleagues makes it easier to deal with those days when he has flare-ups. He finds the colder months particularly tough as he

“I HAD TO LEAVE MY POST DUE TO MY DIAGNOSIS” Having an understanding employer isn’t always enough – IBD can be a dealbreaker in certain circumstances.

Elliot James, Crohn’s and Colitis UK’s young people and families development officer, had to give up a position with the Royal Navy Reserve following his diagnosis with Crohn’s Disease.

“At the time, if your Royal Navy job allowed it – for example, if you were shore-based

– you could be medically downgraded once you had a confirmed diagnosis,” Elliot says. “But that wasn’t possible with my role so I was discharged on medical grounds.”

Elliot has had a varied career so far, which has included working for the Church of England as an ordained minister.

While training for ministry the church raised concerns about his condition.

Elliot had to allow the church’s doctor access to his medical records so they could find out more about the severity of his Crohn’s and how it may affect him.

Elliot admits he hasn’t always declared his condition as he didn’t want to be disadvantaged when applying for jobs. Working for the charity has helped him to better understand how unaware employers can be about IBD and

Elliot James now works for Crohn’s and Colitis UK

26 • SPRING 2017 • CONNECT

how it can affect people – even with caring employers.

“When you have to take time off, you may be asked to explain why. How do you articulate fatigue in that context?” he asks. “Trying to explain that it isn’t just a matter of you feeling a little sleepy can be difficult.

“I feel those questions need to be approached with much more gentleness by employers as it can be tricky to explain the symptoms associated with a flare-up or a worsening of your condition. You may find yourself being pulled into a meeting to discuss your absence all because someone didn’t understand what you meant by fatigue. Taking the time to find out more about how IBD affects an employee is the best way to gain that understanding.”

I DON’T WANT TO BE EMPLOYED AS A NUMBER IN THE WORKPLACE

DO YOU DISCLOSE? You may be concerned that you will be at a disadvantage if you declare your IBD on an application form, CV or at an interview.

However, the Equality Act 2010 makes it unlawful for employers to ask invasive questions

about your health – including previous sickness absence – before making a job offer.

If you do mention your IBD you may find it helpful to show them our leaflet, Employment and IBD: a guide for employers.

Steven Sharp and his supervisor, Helen McKenna

experiences fatigue and joint pain.

His sleep can also be affected. At those times, his team are always keen to help.

“There have been days when Steven hasn’t been too well and he’s the kind of guy who will still make the effort to come into work even

If your diagnosis comes when you are already working, or if your condition deteriorates, you may wonder whether to tell your manager about it.

Although there is generally no legal requirement to

disclose a medical condition it may be something to think about.

when he’s not feeling 100%,” says Helen McKenna, Steven’s office supervisor. “We try to support him as much as we can as we fully understand his condition and how it can affect him. I have arthritis and when Steven’s explaining about his joint pain I really do understand.

“Steven’s role is predominately desk-based, making and taking calls, although it also includes carrying out administrative tasks. When he has issues with his joints we will do the running around for him. For example, if he wants a drink one of us will get it for him. If he has to do some research on one of the computers in the office we’ll find out what he requires and get that information for him.

If he needs to collect print-outs we’ll take care of that too. We help out to ensure Steven doesn’t have to move out of his chair for any other reason than to go to the toilet.

“He has explained to us how embarrassing it can be when he isn’t well at work. We give Steven as much time and space as he needs and we support him in every way we can.

Most of us didn’t know anything about Crohn’s or IBD before meeting

FOR MORE INFORMATION crohnsandcolitis.org.uk/ employersguide

Steven. He’s really given all of us a better understanding.”

Infotone has also embraced Steven’s passion for fundraising for Crohn’s and Colitis UK and the company has helped to raise awareness of IBD throughout its sites in Scarborough, York, Livingston and Dublin.

Even though the Livingston office only opened in May, the company was keen to get on board and support Steven and Crohn’s and Colitis UK by wearing purple for World IBD Day. Steven is also one of the charity’s community champions and is passionate about raising awareness and funds – he has raised more than £12,000 in the past two years, with the full support of Infotone.

Steven appreciates that other people living with IBD may not feel as comfortable opening up to employers and colleagues.

“They may worry that they’re going to be judged negatively or perhaps won’t be seen as favourably as others if they choose to talk about their health,” he says. “Concerns around how IBD will interfere with work are another big cause of employment anxiety. It is always a worry in the back of my mind that I could have a bad flare-up that could make me very ill and affect my employment.

However, I’d like to think that as more employers gain an understanding of IBD they will see the person they are employing, not just the condition.”

CONNECT • SPRING 2017 • 27

YOUR VOICE OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

TRIATHLON OF TRIUMPH

D

erek McEwan, a trustee of Crohn’s and Colitis UK, has completed marathons all over the world to raise funds for the Catherine McEwan Foundation, which he founded in 2003 in memory of his mother. She died from the effects of Crohn’s Disease when he was only 16.

The charity splits the funds it raises between Crohn’s and Colitis UK and the Glasgow Children’s Hospital Charity, and is always making headlines with its high-profile fundraisers.

Last year Derek sought a new challenge that would not only push him to his limits but could also attract serious sponsorship. When he and friend Barry Cook heard about an epic triathlon challenge from Marble Arch in London to

The pair row across the English Channel

Derek McEwan tells why he decided to take on the Arch2Arc challenge with friend Barry Cook, and how they raised £100,000 doing it

the Arc de Triomphe in Paris it seemed like a perfect fit.

“We wanted to pick a goal that would not only test our limits and represent a really monumental achievement, but one that would raise a lot of money and get people’s attention,” says Derek.

Their Arch2Arc challenge would require an intense training regime. The pair took on the Glasgow Children’s Hospital Charity Cycle and ran marathons in Edinburgh and London as warm-up events.

“We underwent extensive training seven days a week to ensure we were physically and mentally ready for the challenge,” says Derek.

“The marathons really helped build up momentum for the big event.”

The pair sacrificed time with their families to ensure that they were ready to tackle the six-day challenge head on in August 2016.

“For the first leg between London and Dover we ran a daily marathon for three days.

On the first day we ran 29 miles, the second 31 miles, and 27 miles on the final stretch into Dover. After this we rowed 22 nautical miles across the English Channel to Calais before cycling 181 miles to Paris in the final two days,” says Derek, reflecting on the mammoth task. “We had people spurring us on at every leg of the journey and everyone really recognised the effort we put in. It was incredible.”

A community of supporters was built up around the Arch2Arc challenge who held their own fundraising and awareness-raising events.

“Overall Arch2Arc raised more than £100,000,” says Derek. “It’s really gratifying to

IT’S REALLY GRATIFYING TO SEE EVERYONE’S HARD WORK RAISE SUCH A REMARKABLE SUM

OSTOMY BAG VIDEO SURPASSES

120k HITS Steve Cartmail enjoys social media success as more unexpected opportunities come his way

A

GLASGOW CHILDREN’S HOSPITAL CHARITY/ STUART WALLACE

Derek McEwan (right), who took on the Arch2Arc challenge with friend Barry Cook (left)

see everyone’s hard work raise such a remarkable sum.”

Derek believes these events encourage those living with Inflammatory Bowel Diseases (IBD) to open up and establish friendships with people living in similar situations.

“IBD can be quite an isolating illness and people are often left feeling that they’re unable to talk about it,” says Derek. “That’s why the work and fundraising efforts of the charities linked to Arch2Arc is so vital, because

they help create communities where those living with IBD can share their experiences and advice.”

Derek now has his sights set high for 2017. “This year a team of us will tackle the Three Peaks Challenge, climbing Ben Nevis, Scafell Pike and Snowdon all within 24 hours,” he says. “We’ve got quite a few people on board already.”

FOR MORE INFORMATION visit www.catherinemcewan foundation.com

video showing how to change an ostomy bag has been viewed more than 120,000 times on Crohn’s and Colitis UK’s Facebook page.

The clip was created by Steve Cartmail, who was diagnosed with Ulcerative Colitis in 2008.

“I’ve had people living in America and New Zealand thanking me,” Steve explains. “But for me, changing my ostomy bag has become as routine as changing my clothes. If the videos can benefit others in any way then I’m happy.”

Prior to diagnosis, Steve had been suffering with his symptoms for about four months. After plucking up the courage to visit his doctor, his condition was confirmed. Over the following few years he was placed on a variety of steroids, but in 2014 he ended up in hospital with severe symptoms.

“I was really quite poorly and going to the toilet about 30 times a day,” says Steve. “My IBD consultant met me at A&E and told me that because the

medication was having no effect and 85cm of my colon was ulcerated, the only viable option was to get rid of my bowel the following day.”

For Steve, his ostomy bag was life-changing – and has led to a number of surprising opportunities, including modelling special underwear for ostomy bag users.

“It’s not something I was expecting to do at 47,” laughs Steve. “My ostomy bag has really built my confidence. It has given me back my health and my dignity, and I’ve just learned to embrace it.”

WATCH THE VIDEO crohnsandcolitis.org.uk/stomasteve

OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

D

edicated fundraiser Jonathan Thomas died on 22 October 2016, just a day after marrying his partner, Sian. He had been diagnosed with terminal bile duct cancer earlier in the year, having lived with Ulcerative Colitis and Primary Sclerosing Cholangitis for 13 years.

Inspired by the memory of her husband, Sian Thomas, 28, decided to embark on a fundraising journey from Jonathan’s hometown – Merthyr Tydfil in Wales – to the Glasgow home of his favourite football team, Celtic.

“When I first met Jonathan he was involved in lots of charity events with the Tyneside No.1 Celtic Supporters Club in Newcastle,” reflects Sian. “He had taken part in the Six Peaks Challenge, cycled from Swansea to Celtic Park and walked the West Highland Way for charities including Crohn’s and Colitis UK.” “After Jonathan passed, I set myself a challenge to raise funds for the charities close to his heart,” she adds.

“Alongside our friend, Iain McGovern, who used to run the Tyneside No.1 Celtic Supporters Club, we decided to raise for Crohn’s and Colitis UK and the Celtic FC Foundation.”

Sian set herself the task of completing the 360-mile journey in two weeks, finishing up on the one-year anniversary of her husband’s death.

“The first couple of days were really challenging. It was so hilly and our muscles ached from the strain,” laughs Sian.

“Thankfully everything got slightly easier after that.”

Sian was joined by friends and family on different legs of

30 • SPRING 2017 • CONNECT

Sian is joined en route by family and friends and, inset, Sian with husband Jonathan

LOVE AND DEVOTION

Sian Thomas organises 360-mile walk from Merthyr Tydfil in Wales to Celtic Park in Glasgow in memory of her late husband

the journey to rally her on.

Her story soon spread across social media.

“We received so many donations and messages from people whose lives are touched by Inflammatory Bowel Disease,” says Sian.

Throngs of fans greeted her group of intrepid walkers at Celtic Park.

IT WAS TOUGH BUT WE GOT SUCH A HIGH FROM THE WHOLE EXPERIENCE

“It was quite emotional, especially as it was the anniversary [of Jonathan’s death],” says Sian. “It was tough – particularly the unrelenting blisters – but we got such a high from the whole experience.”

With donations still rolling in, the Walk for Jonathan has raised more than £20,000.

TOM BEDFORD MEDIA

YOUR VOICE

A KNIGHT’S TALE Historic journey provides an unusual chance to raise money

Crohn’s and Colitis UK loves to hear about the great things that you do to fundraise, raise awareness or to support others living with IBD.

R

ecreating a voyage made by an AngloSaxon king 950 years ago is not the most obvious activity to connect with Inflammatory Bowel Disease (IBD), but that’s how Matt Clarke decided to raise money and awareness after finding out his girlfriend was living with Ulcerative Colitis.

“I was absolutely shocked at how many people are affected by IBD and how little I knew about it,” reflects Matt.

So he signed up for an event commemorating the 950th anniversary of the Battle of Hastings – a journey following in the footsteps of King Harold II from York.

Matt joined the final leg from London to the historic battleground.

Matt Clarke, right, on a journey marking 950 years since the Battle of Hastings

“The Battle of Hastings was a pivotal point in British history,” he says. “This was a chance to put myself to the test and an ideal opportunity to raise money and awareness for those living with IBD.” As half of the challenge was completed on horseback, Matt underwent riding lessons

to ensure he was fully equipped to tackle the mammoth task head on. The group received huge support in the towns and villages they passed through, being greeted by locals with beer and cake.

“We raised more than £300 and my girlfriend was over the moon,” says Matt.

A ROYAL SEAL OF APPROVAL Volunteer Bernie Dornan receives MBE

Bernie has volunteered for the charity for more than 10 years

WHAT ARE YOU UP TO?

As a volunteer with Crohn’s and Colitis UK’s Parent to Parent helpline, Bernie Dornan has provided extraordinary support to families for more than 10 years. She got involved after her daughter was diagnosed with Crohn’s Disease.

Bernie has also worked with children and families for more than 30 years as a social worker. In November 2016 her efforts were

recognised with an MBE awarded by the Queen. Visiting Buckingham Palace, she says, was an unforgettable experience.

“I still have to pinch myself to be convinced that it really happened,” laughs Bernie. “Getting to meet so many wonderful people who were recognised for their incredible achievements was just amazing.”

Are you planning a charity event? Doing something a little different to raise money? Have you recently undergone surgery and have a story to tell? Do you blog about your experiences of life with IBD? Are there any tips and tricks you’d like to share with others?

Let us know!

GET IN TOUCH AT connect@ crohnsandcolitis.org.uk

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 condition and the treatments that may be used. It also looks at some of the more general concerns that you may have as a parent, and includes suggestions based on the experiences of other parents of children with IBD.

IBD IN CHILDREN: A PARENT’S GUIDE This booklet has been produced to help you understand your child’s

DLA FOR CHILDREN Having a child with IBD may create all sorts of extra expenses, such as higher heating bills, special diets, taxi fares, laundry etc.

Disability Living Allowance (DLA) can help to meet these, but you can spend DLA on

FUNDRAISING ROLES

Overton Dramatic Society makes Crohn’s and Colitis UK its charity of the year

I

BD is taking centre stage at performances by amateur dramatic group Overton Dramatic Society, which has declared Crohn’s and Colitis UK its charity of the year. Collections took place at the Hampshire group’s winter pantomime and will also happen at its summer show, Guys and Dolls. Other

performances and social events throughout the year will also raise money for and awareness of the charity.

Group member Chris Penney, who works behind the scenes on productions, nominated Crohn’s and Colitis UK, and in doing so learned that IBD affected at least five members of the society.

I HAD ACUTE COLITIS AND SURGERY TO SORT IT OUT 32 • SPRING 2017 • CONNECT

anything you wish, not just the extra expense caused by illness. This guide is designed to take you step by step through the whole process of making a claim for DLA. LIVING WITH A FISTULA Some people with IBD may develop a fistula. A fistula is an abnormal channel or passageway connecting one internal organ to another, or to the outside surface of the body. Information includes likely treatments along with tips and suggestions which may help you if you are living with a fistula.

MICROSCOPIC COLITIS Microscopic Colitis is an Inflammatory Bowel Disease that affects the large bowel

(colon and rectum). This publication includes information on diagnosis, possible causes, and treatments.

SEXUAL RELATIONSHIPS AND IBD If you have IBD a common cause for concern, although people don’t always like to talk about it, is its potential impact on sex and sexual relationships. This information sheet looks at how common IBD symptoms and treatments, and the feelings often associated with these, can affect the physical and emotional aspects of a sexual relationship.

FOR MORE INFORMATION go to crohnsandcolitis.org.uk/ publications

The cast gears up for 2016’s pantomime

“What particularly prompted me this year was the shock death of Glenn Frey, the frontman of The Eagles,” Chris explains. “They had long been one of my favourite bands, and it was a big shock to hear that someone had died from complications of Ulcerative Colitis in 2016.”

Chris has high hopes that Overton Dramatic Society will raise a big sum for Crohn’s and Colitis UK: “Once a charity is nominated, the whole group puts their weight behind it.”

He has long been involved with Crohn’s and Colitis UK – having been a prominent supporter since 1979, and one of the eight founder members.

“At the time, there was an obvious gap,” he explains.

“I was national secretary of the Ileostomy Association, having had acute Colitis and surgery to sort it out. As soon as I took over that role, half of the postbag was from people who weren’t facing surgery but wanted to know what treatments were around.”

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

INFECTION PROTECTION

Q

If I am on azathioprine is it still safe to work where there is an increase of getting an infection, eg in a school, a hospital?

DR HAWTHORNE SAYS

Yes. Azathioprine has a mildly immunosuppressive effect, and no specific avoidance of working with other people is necessary.

There is a small increase in the risk of virus infections, so flu vaccination is important in the autumn.

Otherwise you only need follow the same commonsense practical hygiene that is applicable to the ‘normal’ population.

It is still safe to work in a school if taking azathioprine

to help with my symptoms?

Any tips for coping?

DR HAWTHORNE SAYS

DOCTOR’S NOTE

Q

I have been diagnosed with IBD but have to wait four months for a follow-up appointment.

Should my GP be prescribing some medication in the meantime

This entirely depends on your individual situation and symptoms, so the best thing to do is consult your GP. PROFESSOR RAMPTON SAYS

If you want further advice beyond what your GP can offer I’d suggest contacting the hospital’s

specialist IBD nursing helpline or email address. If your local service hasn’t got these options, push for them, if necessary through the local IBD patient panel.

IS WINE FINE?

Q

Are there any guidelines for alcohol intake with IBD?

DR HAWTHORNE SAYS

No. The advice for alcohol intake in those with IBD is the same as for the ‘normal’ population, unless an individual patient knows alcohol upsets them, or interacts with specific drugs they are taking.

Metronidazole, an antibiotic, is the most commonly prescribed drug that you should not drink alcohol when taking.

SHUTTERSTOCK

Alcohol advice is no different for those with IBD

Ask your doctor for tailored advice

CONNECT • SPRING 2017 • 33

MY LIFE

‘I DON’T REMEMBER WHAT LIFE WAS LIKE BEFORE’

Jenny Cook has been living with Inflammatory Bowel Disease (IBD) since she was four.

The 13-year-old’s fundraising efforts secured her a double win at last year’s Young Scot Awards I was diagnosed with Ulcerative Colitis (UC) when I was four years old. What upsets me most is that I don’t remember what life was like before.

garden at home in East Kilbride. Last January Nicola Sturgeon, Scotland’s first minister, came to officially open it and stayed for lunch.

I was six when I had surgery to remove my large bowel – the first of three operations. All I remember is waking up in the high-dependency unit wrapped up in machines and wires, with about 10 nurses trying to untangle me.

When I was diagnosed, social media wasn’t such a big thing and it was isolating to have UC. But now it is easy to make contact with other young people who have Inflammatory Bowel Disease and that helps a lot.

Me and mum have spoken to people as far away as Australia, and down south, on Skype.

Now I am 13, most people wouldn’t know that I have UC. It’s an invisible illness.

But I do get tired easily, have sore joints, and go to the toilet a lot. People at school are very supportive.

I started fundraising when I was five, and spending long stays in hospital. I wanted to make things easier for other children. There was a cheese and wine party at my primary school and I was allowed out of hospital for the evening, and made a speech and everything.

That raised £5,000.

34 • SPRING 2017 • CONNECT

WE RUN THE FUNDRAISING FROM A SHED IN THE BACK GARDEN AT HOME IN EAST KILBRIDE Since then, there have been seven annual ‘Tea Jenny’ ladies’ lunches held in Glasgow, and so far £285,000 has been raised.

This year we made £20,000 in one afternoon. The money goes to the Royal Hospital for Sick Children in Glasgow, where I am

treated, and the Catherine McEwan Foundation, which supports Crohn’s & Colitis UK and helps to pay for research and IBD specialist nurses.

My mum is my unpaid PA, and we run the fundraising from a shed in the back

I have a Facebook page – Tea Jenny – that has 3,000 likes and raises awareness of IBD. I am also on Twitter (Miss_Jenny_Cook), and I am a hospital ‘buddy’ to IBD patients who might want to talk to someone their own age. They ask about my experience of the medication and the surgery, that sort of thing.

I think I might want to be a journalist when I am older.

But I’ll always keep on fundraising.

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

DAVID MCNIE

When I was younger I was on around 20 different medicines. Thankfully, I don’t need that any more.

I had a stoma bag for a year, and then that was reversed and I have a j-pouch.

companion Introducing the Crohn’s and Colitis Companion Whether you’re newly diagnosed or have been living with Inflammatory Bowel Disease (IBD) for a while, the Crohn’s and Colitis Companion streamlines reliable and relevant information, helping you to get answers, access support and take control.

The mobile-friendly website has been designed with IBD patients and friends, family members and carers in mind. It includes links to reliable and trustworthy sources, such as our charity’s publications, NHS Choices and other support organisations.

Find out more at

companion.crohnsandcolitis.org.uk

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THANK YOU FOR BEING A MEMBER As a valued member of Crohn’s and Colitis UK you are part of a powerful community fighting for change.

Membership is critical to our work and success, and we very much depend on the support of our members in all areas of what we do. That support can really make a difference to the 300,000 people in the UK living with Inflammatory Bowel Disease.

Together we are stronger crohnsandcolitis.org.uk/ membership

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