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CONNECT Autumn 2018 / No 91 / crohnsandcolitis.org.uk

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BY CROHN’S WIN £1,500 IN RESEARCH RAFFLE P36

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Be heard

Join our Patient Voices Network Input from people living with Crohn’s and Colitis is essential to developing and improving heath services. By joining Crohn’s & Colitis UK’s Patient Voices Network, you can make your voice heard.

Sign up with the Patient Voices Network and we will keep you informed of opportunities to participate in focus groups and workshops and complete surveys

that are relevant to your experience – and can help improve care for others.

You will always be able to decide if you would like to get involved with the proposed activity and be able to discuss it with a member of our team first.

For more information or to sign up, email patientinv@crohnsandcolitis.org.uk

WELCOME

IBD PAIN STUDIES GET THE GO-AHEAD P13

JOIN THE PATIENT VOICES NETWORK P2

CONNECT Autumn 2018 / No 91 / crohnsandcolitis.org.uk

Your membership magazine

NARROW ESCAPE HOW DAVE CASE LEARNED HIS CHOKING FITS WERE CAUSED

BY CROHN’S WIN £1,500 IN RESEARCH RAFFLE P36

MONITOR YOUR MAGNESIUM INTAKE P32

THE X FACTOR’S LLOYD MACEY LENDS HIS VOICE TO IBD AWARENESS P16

On the cover: Dave Case lives with Oesophageal Crohn’s, a rare form of the disease. Read his story on page 27.

COVER: CLAIRE WOOD

WE ARE LED

BY THREE CORE VALUES

‘THERE IS A REAL NEED FOR BETTER UNDERSTANDING’

This issue’s guest editor Prof Jon Rhodes is a retired gastroenterologist from Liverpool and chair of Crohn’s & Colitis UK’s medical awards panel

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ince the early days of my medical training I have been interested in the complex challenges of Inflammatory Bowel Disease. There is a real need for better understanding of the causation of Crohn’s and Ulcerative Colitis and also a clear need for better treatments.

As chair of the medical awards panel, I lead the group that advises on which medical research grants Crohn’s & Colitis UK should fund. This year’s seven successful projects (see page 12) cover a range of topics that nicely reflects a mix of important targets for current research. These include studies aiming to better understand the causation of Crohn’s and Colitis, such as those by Dr Gwo-Tzer Ho in Edinburgh which are explored in more detail on page 23.

I am also particularly interested in Dr Tariq Ahmad’s research, which is looking to define the genes that might indicate which treatment strategies may be most effective for which patients. Currently one of the largest clinical problems is that the new biological treatments only work really well in about

two-thirds of patients and we do not know why, nor are we very good at identifying in advance which patients will respond best to which treatment.

A major new venture highlighted in this issue is the development of the first targeted research network (see page 13). This will be focused on pain – with efforts to improve understanding of its mechanisms and treatment in patients with IBD. At present none of the available painkillers is ideal for use in IBD and there is a major need for improvements.

Lastly, I would like to thank David Barker, who has recently stepped down as CEO of Crohn’s & Colitis UK (see page 8), for the great support he has given to UK research and researchers in Crohn’s and Colitis – we will miss you.

Jon Rhodes

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 • AUTUMN 2018 • 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.

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: helpline@crohnsandcolitis.org.uk LiveChat: 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

AUTUMN 2018

CONTENTS CONNECT Our address is: Crohn’s & Colitis UK First Floor Helios Court 1 Bishops Square Hatfield Business Park Hatfield AL10 9NE

#crohnsandcolitisuk

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

I DIDN’T KNOW I WAS GOING TO RAISE THAT MUCH

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connect@ crohnsandcolitis.org.uk General enquiries helpline@ crohnsandcolitis.org.uk Online www.crohnsandcolitis.org.uk Membership and general enquiries 01727 830038 Connect is the magazine for Crohn’s & Colitis UK. Registered charity: England 1117148 Scotland SC038632 Editor Fiona McKinlay fiona.mckinlay@ thinkpublishing.co.uk Editor for Crohn’s & Colitis UK Jaina Shah Editorial board Juliet Chambers, Dan McLean, Caroline Reed Contributing editor Sian Phillips Medical editor Dr Philip Smith Editorial assistant Nicola Love Sub-editors Sam Bartlett, Sean Guthrie Designer Andrew Bell Published by Think on behalf of Crohn’s & Colitis UK

MIKE WILKINSON, POLLY THOMAS, MATT THOMAS

Think Suite 2.3, Red Tree Business Suites, 33 Dalmarnock Road Glasgow G40 4LA www.thinkpublishing.co.uk ISSN 2059-8408

NOTEBOOK 6 What the survey said Almost half the respondents feel their condition has hindered career progression 8 Research projects funded Includes an investigation into the link between depression, antidepressants and Crohn’s or Colitis flare-ups

FEATURES

16

YOUR VOICE 30 Four fab fundraisers Young people make award-winning contributions 33 Just ask Experts answer your queries 34 My life Glenn Williams, a 22-year-old bowler and history buff

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DON’T FORGET TO ORDER YOUR CHRISTMAS CARDS

16 ‘Singing helps me manage my condition’ The X Factor’s Lloyd Macey shares his tactics for coping with Crohn’s Disease and why it’s important to speak out 20 Just the ticket Meet 10-year-old Millie, who raised £1,500 selling tickets for the charity’s Raffle for Research 24 Mixed signals Everyone’s experience is different – but some are more unusual than others.

Four people who received unexpected diagnoses share their stories

SEE YOUR CHRISTMAS CARD BROCHURE INCLUDED INSIDE THIS MAGAZINE

Available at crohnsandcolitis.org.uk/cards or call 01227 811614

CONNECT • AUTUMN 2018 • 5

NOTE BOOK NEWS FROM AROUND THE UK

POTENTIAL FOR CHANGE

QUALITY OF LIFE SURVEY HIGHLIGHTS IMPACT OF CROHN’S AND COLITIS ON CAREERS, EDUCATION AND MORE

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round 8,000 people living with Crohn’s or Colitis participated in the 2018 Quality of Life survey, which explored the ways IBD affects them on a daily basis.

“We wanted to understand the actual impact on your day to day; how you feel about yourself

and your life, and the things that you do,” says Dr Georgina Rowse, clinical psychologist at the University of Sheffield, who helped to shape the questions for the survey and analyse the results.

“When you’re trying to understand how people are living with their IBD, it isn’t as clear cut as how many

KEY FINDINGS

1 in 3

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48%

agree or strongly agree that IBD stops them doing what they’d like to do in life

With this in mind, the survey was shaped around how people felt their Crohn’s or Colitis affected the quality of their lives.

Nearly half (48%) of respondents said that their Crohn’s or Colitis stopped them from doing what they wanted to do – with 44% stating that their condition hindered them reaching

81%

44%

agree or strongly agree that IBD stops them reaching their full potential in work.

people with Crohn’s and 1 in 5 of people with UC say that their condition has stopped them reaching their potential in education

times you are going to the loo a day,” she says. “One person who goes to the loo 10 times a day could be absolutely fine and they manage it.

“For another person who goes 10 times a day it could be really difficult and it could upset your social networks, your work, education.”

felt their IBD impacted on their ability to do social activities

1 in 5 50%

feel left out (19%) or that nobody really knows them well (23%)

feel the public has “no” or “limited” understanding of the needs of people with IBD

10%

reported experiencing stigma or unfair treatment because of their IBD regularly or most of the time

CASE STUDY: THE IMPACT OF MY ILLNESS

AMBER DAVIES, 20

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Dr Georgina Rowse

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their potential at work.

Additionally, nearly a third of people with Crohn’s agreed it had prevented them fulfilling their potential in education, and around a fifth of those with UC felt that way.

The majority of respondents felt that their IBD impacted on their ability to do various activities such as exercise, chores and socialising at least some of the time.

WE WANT THESE FINDINGS TO MAKE A DIFFERENCE TO PEOPLE’S LIVES

Around 10% reported experiencing stigma or unfair treatment regularly or most of the time because of their condition.

In terms of maintaining their wellbeing, only 3% of respondents reported never finding it hard to cope with IBD, while the majority (51%) found it occasionally hard to cope with their condition – and the rest finding it frequently so.

Dr Rowse says: “We can use these findings to make a difference so we can limit the impact Crohn’s and Colitis are having on people’s lives. We can create information leaflets, look at service provision and, ultimately, maybe develop psychological interventions.”

he past years have been extremely difficult and draining both physically and mentally as a result of my Colitis. I spent more time in hospital than in school, with my symptoms worsening with age. I somehow managed to achieve six As and two Bs at GCSE, mostly from hospital while trialling all meds available. I was supposed to do around 15 GCSEs but had to drop to eight as a result of my health and taking time off for treatments.

With A-levels came worsened health – I had to take a year off in the middle.

I had my first emergency surgery, removing the majority of my colon and forming a stoma, at 17.

Over the following year, my Ulcerative Colitis continued to cause issues in

my remaining colon and rectum. By now I had eliminated all available treatments, which led to another emergency surgery – my completion proctectomy – at the age of 19.

I completed my A-levels, again mostly from hospital, gaining an A* and a B. My illness has had a huge impact on my higher education. Having always been one of the top of the class, my focus was turned to my health and treatments instead, while having to catch up with my education in between.

Due to my illness, I didn’t achieve everything that I wanted to. Perhaps in a world with better or more effective treatments this could happen. However, I am still immensely proud of what I’ve managed to do while battling Colitis at the same time.

Amber receiving her runner-up prize for the Alex Demain Young Fundraiser of the Year Award (see page 30 for more information)

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FOND FAREWELL TO CHARITY CEO DAVID BARKER STEPS DOWN AFTER FIVE AND A HALF YEARS AT THE HELM

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LEAVE A LEGACY

HAVE YOU CONSIDERED INCLUDING CROHN’S & COLITIS UK IN YOUR WILL?

8 • AUTUMN 2018 • CONNECT

David oversaw the charity doubling in size and income

“The board of trustees and I are enormously grateful for all that he has done for the charity.”

David says: “It has been a tremendously fulfilling and enjoyable five and a half years with the charity, and I am very proud of what we have achieved together. It has been an

honour to work alongside so many talented, inspiring and determined individuals and I wish you all my best wishes and every success for the future.”

Keep an eye out for news of David’s successor in the coming months. Read more about the charity’s recent achievements on page 15.

Having a will makes it much easier for your family or friends to sort everything out and it is especially important to have one if you have children or family that depend on you financially, or if you want to leave something to friends, organisations or charities.

This October is Free Wills Month, when participating solicitors may be able to help you – if you’re 55 or over – record how you want any money, property and possessions to be shared when you die. For info see freewillsmonth.org.uk

FIVE REASONS TO MAKE A WILL Make your 1 wishes known Make it easier for 2 friends and family Protect your partner’s 3 rights (if you’re not in a civil partnership or married) Give your assets to 4 people or organisations you care about Help control your 5 inheritance tax To discuss leaving Crohn’s & Colitis UK a legacy email remember@crohnsand colitis.org.uk

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rohn’s & Colitis significant period of UK has expressed transformation, its sadness and modernisation and growth. gratitude at the Under his leadership, the departure of chief charity doubled in size and executive David Barker, income, and we are now who stepped down in reaching and supporting September. After five record numbers of and half years, people, as well he has left the as funding a charity to set growing up his own portfolio of consultancy research and business, delivering advising and campaigns and Chairman supporting partnerships to Sue Cherrie charities and drive lasting change. not-for-profit organisations.

“As our chief executive, Sue Cherrie, chairman David always put the needs of Crohn’s & Colitis UK, of people affected by says: “David led the Crohn’s and Colitis at the organisation through a heart of our work.

STUDY SAYS SCRAP PRESCRIPTION CHARGES £180

NHS COULD SAVE MILLIONS

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ropping prescription charges for people with Crohn’s and Colitis would save NHS England more than £20m a year, according to new research.

The study from the York Health Economics Consortium (YHEC) was commissioned by Crohn’s & Colitis UK and Parkinson’s UK, co-chairs of the Prescription Charges Coalition. It quantifies the impact of prescription charges on people of working age with long-term conditions.

Previous research has shown around a third of people with Crohn’s and Colitis who pay for prescriptions don’t collect and take medications because of the cost, which can lead to

Average savings per Crohn’s and UC patient per year if charges were scrapped

£20M

Saving to the NHS per year if prescription charges for people with Crohn’s and Colitis were scrapped

complications and, at worst, emergency treatment.

The YHEC analysis shows that any loss in revenue from removing charges would be more than offset by savings to the NHS in England.

DOWNLOAD THE REPORT prescriptionchargescoalition.org.uk

CHANGES TO ADALIMUMAB The patent for adalimumab (Humira) expires in October, so biological medicines with similar active properties (or ‘biosimilars’) will soon be available for prescription.

Why change?

As well as treating Crohn’s and Colitis, adalimumab is widely used for arthritis and other conditions.

By changing to biosimilar drugs, the NHS hopes to save in the region of £200m per year. From early 2019, five biosimilars will be available to health trusts – so the medication patients are prescribed may change.

I take Humira. What should I do?

Depending on your local NHS Trust, you may be given the option to switch to a biosimilar. If you have any questions or concerns, you should raise these with your clinical team. Speak to your IBD nurse or consultant at your next appointment about how changes may affect you.Keep an eye on the Crohn’s & Colitis UK website. We are monitoring the changes in order to keep patients informed and updating our adalimumab information sheet as Connect goes to press.

MARTIN SHIELDS / ALAMY STOCK PHOTO

HOW CAN YOU HELP? Download a lobby pack from the Prescription Charges Coalition website and lobby your MP – and sign up to the database to keep informed.

.

TAKE ACTION prescriptionchargescoalition.org.uk/ take-action

What will be different?

The pen, citrate content and homecare arrangements associated with the new medicines may change. We will provide further information about these when we know more.

READ MORE crohnsandcolitis.org.uk/adalimumab

CONNECT • AUTUMN 2018 • 9

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The role of the regional clinical champions includes:

Identifying local channels and opportunities to raise awareness of IBD in primary care

APPOINTMENTS WILL HELP GPs IMPROVE LOCAL KNOWLEDGE AND UNDERSTANDING OF CONDITION

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o build upon the success of the Royal College of General Practitioners (RCGP) and Crohn’s & Colitis UK IBD spotlight project, seven regional clinical champions are being recruited from across the United Kingdom to join the project team to raise awareness and improve understanding of Crohn’s and Colitis in primary care.

The IBD spotlight project

CASE STUDY CHARLIE ANDREWS, REGIONAL CHAMPION I’m excited to be a part of the project from a personal and professional perspective.

I was diagnosed with UC at 15 and went through

10 • AUTUMN 2018 • CONNECT

began in 2017 and has been extended by a year to March 2019. The regional clinical champions will work in partnership with the spotlight project clinical lead, Dr Kevin Barrett, and representatives from the RCGP and Crohn’s & Colitis UK. Their role will be to improve local knowledge and understanding of IBD in various ways with GPs (see right).

There are four new

every treatment until I had surgery to remove my colon at the age of 20. The care and treatment I had as a patient made me decide to convert to medical training.

Now a GP, I tell my story to groups of GPs and other healthcare professionals to show how all-encompassing the condition is.

regional clinical champions in England – James Rayner (Midlands), Kirsty Brooks (East), Charlie Andrews (West) and Catherine Allan (North) – and one for Wales, Charlotte Reilly.

The regional clinical champions for Scotland and Northern Ireland are yet to be appointed.

GET INVOLVED To contact your clinical champion, email healthdev@ crohnsandcolitis.org.uk

Delivering local education sessions to GPs Connecting primary and secondary care to improve pathways and communication Promoting the value of joined-up care for patients with IBD to local commissioners or health boards Being the voice of IBD for the RCGP

running sessions for GPs to Since starting as a improve their knowledge of regional clinical how to manage flares, champion, I’ve been which is one of the project’s linking up with the priority areas. I’m also IBD team in my area looking into creating and have some ideas an online webinar of how we can on IBD, which better integrate patients will primary and GP Charlie be able to secondary care. shares his own experience too access.

I’m also

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REGIONAL IBD CHAMPIONS

Developing and promoting learning resources, such as the IBD toolkit – see rcgp.org.uk/ibd

THE POWER OF RESEARCH

OUR FIVE-YEAR STRATEGY FOCUSES ON MAKING AN IMPACT ON THE LIVES OF PEOPLE WITH IBD

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rohn’s & Colitis UK is the country’s foremost medical research charity dedicated to IBD and well respected in the clinical community. Its new research strategy aims to ensure its studies have even more impact, says Helen Terry, director of research.

“We want to be much more proactive,” says Helen. “We want to make sure the research we fund is prioritising areas which are of importance to the patients and supporters – not just the clinicians or researchers.”

Research today could improve lives tomorrow

Historically the charity has funded research projects through annual awards to the highestquality applications.

Important studies have been backed by the charity to the tune of £10m.

Crohn’s & Colitis UK will continue to attract applications in this way but it is also introducing new ways to instigate research in key areas of importance to patients.

Collaborative networks

Helen Terry, director of research

will be created by Crohn’s & Colitis UK to look at important areas of research.

The first will focus on IBD pain (see page 13).

“The charity will become a catalyst for research,” says Helen. Networks could bring together people from very different backgrounds

THE RESEARCH WE FUND MUST BE IN AREAS OF IMPORTANCE TO PATIENTS AND OUR SUPPORTERS

– such as academics, partners from industry and commercial partners – to share information.

“It’s about achieving more than the sum of the individual projects,” explains Helen.

Additionally, she says, commissioning world-class research needs a global outlook. “If somebody is doing research in the United States and it is going to benefit patients in the UK, why would we not work with them?”

The strategy includes the Rising Star Research Career Development Programme, which will fund fellowships and PhD studentships in clinical research.

Additionally, the Nursing Research Awards aim to attract and retain clinical nurse specialists by funding their research in IBD. “Nursing Fellowships will help to attract and retain clinical nurse specialists by supporting (or encouraging) their involvement in research,” says Helen. “It might not make a difference to you right now but it might be the research that was funded 10 to 15 years ago that is making a difference today.”

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FUNDING AWARDED TO SEVEN RESEARCH PROJECTS INVESTIGATIONS INTO THE CAUSES AND TREATMENT OF CROHN’S AND COLITIS WILL RECEIVE A TOTAL OF £643,230 FROM CROHN’S & COLITIS UK

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esides world-class research into the causes and treatment of IBD, Crohn’s & Colitis UK funds and conducts studies that examine living with the conditions.

PROJECTS SET TO RECEIVE FUNDING IN 2018 l Aston University receives £33,790 to plan and test ways to help young people with Crohn’s and Colitis stick to their treatment plans.

“Managing IBD adds complexity to an already demanding phase of life,” says Dr Gemma Heath, principal investigator. The project will develop a tailored programme to support treatment adherence, and help young people with IBD to become managers of their own long-term condition. l Sheffield Teaching Hospitals NHS Foundation Trust is awarded £119,967 to develop and pilot test a tool to support patients with Ulcerative Colitis in choosing between ongoing medical treatment and surgical treatment options.

Around 20-30% of patients with 12 • AUTUMN 2018 • CONNECT

UC will undergo surgery, the majority electively. The Sheffield team, under Professor Alan Lobo, will develop a ‘patient decision aid’ to show the risks and benefits associated with each treatment option. l St George’s, University of London receives £89,670 to investigate the relationship between depression and antidepressant medication and clinical outcomes for patients with Crohn’s and Colitis.

Principal investigator Dr Richard Pollok says: “We will see if using antidepressants leads to fewer IBD ‘flares’ and less surgery [and] examine the effect of Crohn’s and Colitis-related surgery, in particular having a stoma, on developing depression and the need for antidepressants.” l The University of Exeter is awarded £120,000 to develop personalised strategies to reduce ‘immunogenicity’ (an immune

response) to anti-TNF drugs, which causes patients to lose response to the medication over time.

It’s thought that genetic factors may determine why some patients develop antibodies against anti-TNF drugs.

Research lead Dr Tariq Ahmad says that knowing which patients are at high risk of immunogenicity would, in future, lead to targeted use of immunosuppressant drugs. l The University of Cambridge receives £87,463 to study five regions of DNA that are associated with Crohn’s and Colitis and a range of other diseases, such as multiple sclerosis and rheumatoid arthritis.

“These regions are particularly challenging because they do not contain genes,” says principal investigator Dr James Lee. He will use a new technique developed at Harvard University to establish how these five tiny variants in the DNA of Crohn’s and Colitis patients contribute to disease development.

NETWORK LOOKS AT MANAGING PAIN

RESEARCH TEAMS WILL SHARE EXPERT KNOWLEDGE

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new direction for Crohn’s & Colitis UK is to support collaborative research programmes that investigate the same theme at more than one facility or institution. Around £3m will be invested in collaborative networks over the next five years to investigate complex research areas.

Starting next year, Dr David Bulmer and Dr Michael Lee will lead two separate research projects at the University of Cambridge. These will form the nucleus of our first collaborative network, seeking to answer: “How can pain be most effectively managed in people with IBD?”

The aim is to identify new targets for IBD treatments. l Queen Mary University of London is awarded £73,573 to investigate drugs that might delay, prevent or possibly reverse the process of fibrosis (when scar tissue develops in the bowel due to tissue damage caused by inflammation) in Crohn’s Disease patients.

Fibrosis can cause a narrowing (stricturing) of the bowel and a blockage – the leading cause of Crohn’s surgery. This research will look at how valporic acid (VPA) affects the chemical processes in the gut wall cells that result in fibrosis. It may lead to VPA becoming a treatment for fibrosis in Crohn’s patients. l MRC Centre for Inflammation Research at the University of Edinburgh receives £118,767 to build on previous work funded by Crohn’s & Colitis UK. The study examines how the gut’s ‘danger signals’ (cell mitochondria) cause inflammation and how drugs could block this inflammatory response.

Read more about this study on page 20.

l Dr Lee’s project will examine why some patients experience extreme or persistent abdominal pain even during Crohn’s and Colitis remission – and whether repeated inflammation makes the nervous system highly sensitive. Dr Lee says: “Our results will improve awareness of the impact of unexplained pain and we hope they will lead to highly detailed

nerve and brain-imaging studies which, in combination with disease and genetic data already in the IBD BioResource [a national database of people with Crohn’s and Colitis], will pinpoint where pain susceptibility lies in the nervous system in people with Crohn’s and Colitis.” l Dr Bulmer, along with co-investigator Dr Tim Raine, Consultant Gastroenterologist at Addenbrookes, will study MMPs – matrix metalloproteinases – the enzymes that cause tissue damage and inflammation in patients with Crohn’s and Colitis. The research seeks to use MMP inhibitors to identify which of the enzymes stimulate pain-sensitive nerves in Crohn’s and Colitis. This could lead to the use of the inhibitors as effective treatment of abdominal pain in patients with the disease.

MORE INFORMATION crohnsandcolitis.org.uk/research

Our research looks at pain management

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WAYS TO GET INVOLVED WHAT’S ON THE CROHN’S & COLITIS UK CALENDAR?

Put the fun in fundraising by signing up to run, swim or cycle for the charity, like IBD Registry chief executive Liz Dobson, who completed the 100-mile Ride London cycle event in July.

If you love a challenge, why not become involved in one of these? ● Bath Half Marathon (17 March 2019) ● The Great North Swim on Lake Windermere (June 2019) ● Ride London (4 August 2019) ● Tough Mudder (throughout the year)

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Liz Dobson, CEO of the IBD Registry

THRILL-SEEKING SANTAS WANTED Santa Bungee 2018 The O2 Arena, Peninsula Square, London SE10 0DX Are you ready to JUMP IT? Crohn’s & Colitis UK is looking for brave people who look fabulous in red to take part in the annual Santa bungee jump on Saturday 24 November. This is your chance to jump from hundreds of feet in the air, dressed as Father Christmas himself for your charity.

Your outfit – complete with luscious beard – will be provided.

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FIND OUT MORE www.crohnsandcolitis.org.uk/fundraising 14 • AUTUMN 2018 • CONNECT

CHARITY GOES FROM STRENGTH TO STRENGTH HOW CROHN’S & COLITIS UK IS MAKING AN IMPACT

FABULOUS FAMILY DAYS Southampton Family Day 10.00–16.00 St Mary’s Stadium, Britannia Road, Southampton SO14 5FP All patients are welcome to a free, fun day for families with IBD on 17 November. The enjoyable and informative day, held at Southampton FC’s stadium, will include IBD information and advice sessions, and publications and other material from Crohn’s & Colitis UK – plus a pop-up cinema, venue tours, face paintings, magic and other child-friendly, fun activities. Lunch will be provided.

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Manchester Family Network Activity Day 10.00–16.00 Trafford Quays Village, Trafford Way, Stretford, Manchester M41 7JA Join in with a free, fun day for families living with IBD in Manchester on 24 November.

The event includes winter activities, free lunch and a great opportunity for families with children and young people affected by Crohn’s and Colitis to meet, while taking part in a range of enjoyable activities.

£932,773 50+

volunteer networks across the UK ran 546 events for around 30,000 people

10,000+

members joined in 2017, bringing total membership more than 35,000

570,000 patient-information items distributed by the charity to the end of 2017 (up 30% on the previous year)

400

grants given to help people living on a low income with needs arising from their condition

Major supermarkets and travel providers install ‘Not every disability is visible’ toilet signs following huge campaign

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MORE INFORMATION Register at www.crohnsandcolitis.org.uk/ familyevents

research grants awarded by the charity in 2017, £459,529 of which is for medical work

New resources for GPs developed with Royal College of General Practitioners

IBD UK formed with 19 organisations to drive improvements in healthcare for people with IBD

Statistics from Crohn’s & Colitis UK annual report 2016–17. The full report is available at www.crohnsandcolitis.org.uk CONNECT • AUTUMN 2018 • 15

‘SINGING HELPS ME MANAGE MY CONDITION’ X Factor 2017 semi-finalist Lloyd Macey talks about how he manages Crohn’s Disease with deep breathing, exercise and singing

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WORDS ANEIRA DAVIES PHOTOGRAPHS POLLY THOMAS

loyd Macey cuts a striking figure. Dressed in a purple T-shirt to promote Crohn’s & Colitis UK’s WALK IT event in Swansea in June, the singer is eager to chat to fellow walkers with Inflammatory Bowel Disease and learn how others cope. Lloyd’s Crohn’s was diagnosed six years ago.

The 24-year-old, who grew up in Rhondda in south Wales, is best known for taking part in last year’s The X Factor. Lloyd got through to the semi-finals, singing favourites such as Coldplay’s Fix You. But it’s not his appearance on the show or his singing career that he wants to talk about, but his involvement with Crohn’s & Colitis UK. Lloyd was diagnosed with Crohn’s while at university in Cardiff. After a bad batch of spaghetti bolognese, he and his flatmates contracted food

16 • AUTUMN 2018 • CONNECT

poisoning. “My friends all seemed to get better but I gradually got worse,” he explains. “I was about 15 stone at the time and I went up to about 20 stone because I couldn’t pass any stools. People would ask me: ‘Are you eating more?’ I’d say ‘No, I’m eating the same.’”

Lloyd was visibly gaining weight and got to a point where he was afraid of eating anything in case it affected his body. His weight then plunged to 11 stone.

Unsure what was wrong, Lloyd was in and out of hospital and he and his family feared he had cancer, which meant his Crohn’s diagnosis was met with a strange sense of comfort. “I remember the consultant diagnosing me with Crohn’s Disease,” Lloyd says.

“Me and my mum and dad were relieved in a way and sort of grateful I had an answer.”

Lloyd was keen, from the outset, to turn his diagnosis into a positive.

Researching the condition helped him understand it more and he kept a food diary to see what he could and couldn’t eat – a solution that may not work for everyone, he is keen to point out.

“I thought of it as an experiment.

Instead of dwelling on the fact I have got this disease, I looked into it and it became part of life, trying foods and seeing what worked for me. What was great was when I ticked foods off and thought: ‘Well, I can eat this now.’”

Lloyd’s diagnosis has made him aware of how important it is to keep healthy and he manages his condition with a balanced diet and exercise. “It is a different way of life,” he says, “but it also makes you aware of things and you realise how important it is to keep healthy and to keep fit and look after yourself.”

Talking to others with the same condition helped Lloyd when he was diagnosed and it was on social

VOCAL HERO

CONNECT • AUTUMN 2018 • 17

VOCAL HERO media sites that he met others with Crohn’s. He is equally keen to help others who feel scared when first diagnosed.

“I never see having Crohn’s as a hindrance, I never think of it as pulling me back. I always think, ‘How can I help myself now?’ ‘How can I pull through and motivate myself?’ I come back to these social media pages and chat with people and it’s great because you’re not on your own, that’s the biggest thing.”

It may not be surprising that singing also helps Lloyd manage his Crohn’s, and he does deep-breathing exercises beforehand in order to prepare his muscles for performing.

“I do a lot of warm-ups with singing, deep breathing and meditation,” he explains.

“That relaxes my body and the more relaxed I am, the better I feel and my stomach doesn’t seem as inflamed.

“If I’ve had a good day and I’m feeling healthy then I feel like I’ve got this strength in my voice. It’s great.”

Singing has been a lifelong passion for Lloyd but it was during his time as a student that he decided on the spur of the moment to audition for The X Factor. “I never for a million years thought I would audition and then end up getting to the semi-finals but I’m so glad I went for it because it’s completely changed my life,” he

Lloyd and fellow participants at June’s WALK IT

enthuses.

“It is amazing. I’m following my dream and doing what I’ve always wanted to do.”

As well as enjoying his career, being on The X Factor means Lloyd has been able to reach others and speak out about his condition and get involved with Crohn’s & Colitis UK. He was asked to get involved and support the charity, after a friend suggested he get in touch. “I never realised how being in the public eye could mean you could help others,” Lloyd adds.

Lloyd has also appeared on ITV’s

Loose Women to raise awareness of IBD. Although his family are understandably proud of his career, it is his speaking out about Crohn’s, Lloyd adds, that makes them happier still. “I’ve never been ashamed of having Crohn’s and the family are proud of that side of it, that I could have shied away from it and not spoken about it.”

Lloyd’s father, Darren, who joined him at the WALK IT event, agrees. “We try to support him in any way we can and are proud to support Crohn’s & Colitis UK as well. We’re really

STEPS TO SUCCESS MORE THAN £464K RAISED AT WALK IT EVENTS

Crohn’s & Colitis UK’s annual fundraising events saw 4,272 walkers take to the streets of cities across the UK

PLYMOUTH

WALK IT drew 232 participants to the Hoe, the historic heart of the city, on 5 May.

18 • AUTUMN 2018 • CONNECT

BRISTOL

Swimmer Siobhan-Marie O’Connor was the special guest as 320 people took to the streets on 12 May.

SWANSEA

On 2 June Lloyd Macey brought the X Factor, joining 327 participants in a walk along the beach front.

LONDON

WALK IT saw a total of 1,508 people visit such city centre locations as Trafalgar Square on 9 June.

SPLASH NEWS / ALAMY, EVERETT COLLECTION INC / ALAMY

THE MORE RELAXED I AM, THE BETTER I FEEL

passionate about trying to get the word out and make everyone realise that IBD needs to be talked about.”

Lloyd’s advice to others with Crohn’s or Colitis is to chat to people with the same condition and find out what methods work for you, whether that is changing your eating habits or taking medication. Lloyd is keen to point out that those living with IBD shouldn’t be embarrassed about it and that they are their own person first – the condition is just an add-on.

“It doesn’t define you but it is something you have. Just remember that there are so many other people out there who are in the same position and you can help each other.”

Supporting the charity means Lloyd gets to learn from others too and he is excited to be a part of events such as WALK IT. “It’s great that people are happy to chat with me about their Crohn’s,” he adds. “I remember the day I was diagnosed and not knowing what it was, but the more people raise awareness, the more people know about it, they can think, ‘It’s OK, I can look after myself.’”

Although the condition has understandably affected his life, Lloyd maintains an optimistic outlook. “I try to turn it into a positive and think, ‘Now I know how important having a healthy lifestyle is and how to regulate my diet’,” he says.

And with an album out in the autumn, as well as a recent collaboration with the band NBLM, it’s clear that this X Factor star will go far.

MANCHESTER

On 16 June the streets of the city centre hosted 532 walkers and guests the #GetYourBellyOut girls.

EDINBURGH

The Scottish capital welcomed 515 walkers in support of Crohn’s & Colitis UK on 24 June.

IN THE SPOTLIGHT THREE OTHER PERFORMERS WITH IBD

spent the first song of ANASTACIA my lifelong dream of The opening for the American Rolling Stones in a singer was side-stage Porta diagnosed Potty.” with Crohn’s Anastacia aged 13 and is DAN REYNOLDS keen to raise The lead singer of US popawareness of Crohn’s rock group Imagine and Colitis. She says: Dragons opened up about “I suffered the his Ulcerative Colitis in embarrassment and 2015. Diagnosed with the challenge of being a condition aged 21, he teenager and dealing with a disease that held a stigma thought it was the end of his career, but now of shame.” manages his condition MIKE McCREADY with The lead guitarist of exercise American rock band Dan and a Pearl Jam first experienced Reynolds strong core. the symptoms of Crohn’s In 2015 he Disease when he was 21. said: “Over the In 2012 he told the past decade I have worked Huffington Post: “I was hard to find a way of life successful beyond my wildest dreams that helps me to live musically, my life exactly how but very I want to. Healthy. sick Strong. And fairly pain physically. free. However this I had requires a lot of Mike McCready accidents discipline and on stage, and sacrifice.”

NEWCASTLE

On 30 June the city’s Lord Mayor was the special guest as 282 people took to the streets of the Toon.

BIRMINGHAM

Paralympic powerlifter Ali Jawad joined 556 walkers as WALK IT came to the West Midlands on 7 July.

CONNECT • AUTUMN 2018 • 19

Millie (centre) and her family

WORDS SIAN PHILLIPS PHOTOGRAPHS MIKE WILKINSON

JUST THE

TICKET

Meet 10-year-old Millie and her family, who raised £1,500 selling tickets for our Raffle for Research, funding talented scientists such as Dr GwoTzer Ho, whose research could lead to an entirely new way of treating IBD

THE FUNDRAISERS “I was just trying to help raise money because I knew other people would too, and it would all add up to something,” says 10-year-old Millie, who, along with her family, managed to sell £1,500-worth of tickets for last year’s Crohn’s & Colitis UK Raffle for Research.

When the first book of tickets arrived in the post, Millie’s parents, Laura and Fraser, decided to try to sell a few tickets at a birthday party. “We were a bit nervous about asking people for money,” says Laura. “But when we asked the families, we sold the book within minutes and everybody wanted us to order more.”

Millie’s parents had a motive for selling tickets for the charity. Around

XXXXXXXXX

Millie and her family’s motivation for fundraising is to help find a cure for Crohn’s and Colitis

two years ago, after a long spell the stasis of 70% wellness ever since.” of undiagnosed tummy troubles However, he says he’s an optimist. “To culminating in Millie’s hair falling out, the point that I refuse to accept there they discovered that she had Crohn’s. isn’t a cure down the line.”

Although the diagnosis was Millie agrees, saying: “I know that a shock, Laura says it was a relief to there’s a cure that someone’s going have a label for what was wrong and to find one day. And just thinking to get help as Millie was clearly very about that makes me feel better.” unwell. She had gone from the tallest Finding a cure was a big motivation in the class to the smallest – and had for the family’s fundraising. “Although “lost her spark,” says Laura. awareness is important to everybody “The hospital has been with IBD, the thing that really amazing, as has Crohn’s & caught my eye is that it was Colitis UK – it gives so a raffle for research – and WANT TO much information. Once at the end of the day, BRING US Millie had her feeding that [cure] is what I’m CLOSER TO tube put in, she had her interested in,” says A CURE? first afternoon at school Fraser. “Once we’d sold crohnsandcolitis. a week later. When she the initial book in a org.uk/raffle first suggested it, I was flash, we thought we absolutely horrified and would see how many of adamant that she couldn’t go them we could sell. It started back to school, but Vikki [Garrick, with family and friends, then it IBD nurse specialist at the Children’s was at the school gates. And then we Hospital in Glasgow] said: ‘No, we asked the church if we could sell some have to push’.” tickets after one service and the As well as the feeding tube, Millie response was amazing. People were has had a number of treatments, queuing for 20 minutes to buy tickets.” including three months on Laura, a teacher, got permission to prednisolone. “She went from a sell tickets to colleagues. “And then skeleton and changed quite friends of friends heard about it,” she dramatically,” says Fraser. Then it was infliximab, which Millie had a bad reaction to. Now she’s on adalimumab.

“She’s been remarkable coping with it all,” says Laura. Fraser says that she’s infinitely better than at time of diagnosis, “but she’s a long way from being 100%, which would be remission. We seem to have been in

AT THE END OF THE DAY, THAT CURE IS WHAT I’M INTERESTED IN

22 • AUTUMN 2018 • CONNECT

says. “It gave us something qualitative to focus on, it gave Millie a positive focus and it gave us – and the people who know us – something to do. It was a way to help, to respond and to try to make things better. A lot of people came out of the woodwork who wanted to do something.”

“I really didn’t know I was going to raise that much, but I’m really happy I did because it’s helping other people,” says Millie.

Fraser says it’s imperative that other Crohn’s & Colitis UK families get involved. “There are so many people living in the UK with Crohn’s or Colitis. Imagine if every one of those people sold just one book of raffle tickets this year. What an incredible difference that would make.

“My message to everyone reading this article is just sell that one book.

It’s only 20 tickets and if you can just sell that one book, you’ll find out how easy it is to sell.”

XXXXXXXXXX

WE’RE AIMING FOR A TREATMENT THAT RESOLVES INFLAMMATION

Dr Gwo-Tzer Ho in his inflammation research laboratory

THE RESEARCHER If you cut your finger, it becomes inflamed as your body triggers its protective response to repair the skin tissue damage.

For people with Crohn’s and Colitis, damage to the gut tissue also leads to an inflammatory response. However, in this instance it is prolonged and destructive until it is treated, explains Dr Gwo-Tzer Ho, a molecular biologist and consultant gastroenterologist leading a research project into the causes of gut inflammation.

Gwo-Tzer is based at the MRC Centre for Inflammation Research at Edinburgh University, which has been awarded £118,767 by Crohn’s & Colitis UK to follow up on work previously funded by the charity.

The research team has

pinpointed that when gut cells are damaged, they leak the contents – the DNA – of the mitochondria, the energy-giving element of cells.

This gives off ‘danger signals’ to inflammatory cells to begin the process of repairing the gut. However, it leads to an overly aggressive immune response.

Gwo-Tzer explains that while there are many mechanisms to keep the mitochondria healthy, some of these are compromised in people with IBD, “so you get a higher level of damaged mitochondria in the gut cells”. He also thinks the immune system in people with IBD may react more strongly to the leaked mitochondrial DNA. Mitochondria have evolved from bacteria and as such they share many similarities especially in the DNA. “We want to find out which immune cells are particularly triggered by mitochondrial DNA,” he says. The

next step will be to test whether the signals from the mitrochondria can be blocked, leading to a new treatment for IBD. “What we’re aiming for is a type of treatment that is geared towards resolving inflammation,” he says. “This is different to most of the current treatments, which block the immune system.”

Gwo-Tzer adds: “We hope our work, or our data, will take us one step closer to a new treatment for Inflammatory Bowel Disease.”

Helen Terry, Director of Research at Crohn’s & Colitis UK, says: “Supporter donations account for 98% of the research funding that the charity provides.

We are incredibly grateful for their generosity in enabling us to fund these crucial studies.”

Through grants made possible by the Raffle for Research and other fundraising, studies like this can take steps closer to a cure.

Each and every ticket counts.

RESEARCH WE FUND See page 12 for details of recent awards

Gwo-Tzer is taking a new approach to treating IBD

CONNECT • AUTUMN 2018 • 23

MIXED

SIGNALS

Four people share how unusual symptoms led to a different diagnosis for their Crohn’s or Colitis WORDS SIAN PHILLIPS

LYN

24 • AUTUMN 2018 • CONNECT

brilliant gastroenterologist, Dr Keith Leiper at the Liverpool Royal, said: “Right, we’re going to start from the beginning and work out what’s going on.” I had bone scans and biopsies and it was finally discovered I had Lymphocytic Colitis, which is a type of Microscopic Colitis where the colon walls are full of white blood cells. It’s subsequently been re-examined and diagnosed as Collagenous Colitis, where the lining of the colon develops a thicker than normal layer of collagen and gets quite stiff.

I’ve been on lots of medication and had a serious reaction to azathioprine, including high temperatures and headaches. Then I was on mercaptopurine and, when my body reacted against that, a steroid

MORE THAN ONCE I WAS TOLD IT WAS ALL IN MY HEAD

MATT THOMAS

I

have had diarrhoea for more than 40 years and it has been a normal part of my everyday life. I’m 59 now and was only diagnosed with Microscopic Colitis just over 10 years go. When I had scopes to investigate my diarrhoea nothing was showing up [as Microscopic Colitis can only be detected via a biopsy, under a microscope], so I kept on being told it was IBS. Nobody would believe how bad it was and I was told more than once that it was all in my head. I thought I was going mad. I was told: “You’re the most scoped person we have had here.”

Diarrhoea continued to be a daily problem and I was taking 20 Imodium a day, just to get out sometimes.

In 1999 we went to Kenya when my daughter was 16 and I ended up being on the toilet 30 times a day. It was so bad that I was hospitalised when I returned due to the dehydration, and they put me on a liquid diet.

Around a decade ago, I had to be operated on for bowel adhesions and a

DIFFERENT DIAGNOSES Lyn had diarrhoea for almost 30 years before she was diagnosed with Microscopic Colitis

budesonide, which is available in two forms – long-acting Entocort, which suited me, and Budenofalk, which gave me agonising heartburn.

As well as diarrhoea I get terrible mouth ulcers and bowel adhesions, and I’ve had a fissure – a break in the bowel. I ended up requiring an anal-stretch procedure because I’d had diarrhoea for so long that when they were trying to repair the fissure, they couldn’t get any instruments in.

My anus had basically closed over because it was just water I was passing all the time.

I’ve been on Entocort for six years, even though I have steroid-induced diabetes. I take one every other day, as well as co-codamol because I have raging arthritis, making my hands useless. That makes me a bit constipated and my bowel adhesions give me so much pain if I get bunged up.

I try to manage as best I can. Like everybody else, I know where every toilet is. I’ve had to use my Can’t Wait Card a few times. I haven’t been able to work for a few years now. However, I haven’t been hospitalised in the last couple of years because I’ve finally found a drug that suits me.

I want other people to know that they shouldn’t be fobbed off. It took a long while for my diagnosis but finally I felt I was listened to.

WHAT IS …

MICROSCOPIC COLITIS?

Microscopic Colitis affects the large bowel (colon and rectum). There are two main forms: Lymphocytic Colitis and Collagenous Colitis. The condition is called Microscopic Colitis because the inflammation of the bowel lining is only visible when tissue samples are viewed through a microscope. Out of 100,000 people, between one and 11 of them will develop Collagenous Colitis and between two and 19 will develop Lymphocytic Colitis.

CONNECT • AUTUMN 2018 • 25

DIFFERENT DIAGNOSES

EILIDH

WHAT IS …

ORAL CROHN’S?

Crohn’s affects the mouths of more than half of patients with the disease.

Inflammation manifests as open sores that can appear on the tongue or between the lips and gums, making eating and drinking difficult. These ulcers may appear during a flare-up and can be treated with Crohn’s medication.

26 • AUTUMN 2018 • CONNECT

THEY ASKED ALL THESE QUESTIONS AND I COULDN’T SPEAK feel a restriction in my throat, making it difficult to swallow, but at first the doctors and nurses refused to believe there was anything physically wrong and said it was all in my head. It was around June last year that I finally got a diagnosis of Oesophageal Crohn’s after an endoscopy.

They found I had a stricture that made my throat only 3mm wide [the oesophagus is usually around 20mm wide]. I also had ulcers in my oesophagus and was prescribed prednisolone, which helped a bit, and then I moved on to infliximab.

Initially I had biodegradable stents to keep my throat open for eight to 12 weeks at a time before my throat would close again and I’d have to have a new stent put in. I also developed two further strictures.

In January, however, the hospital decided to change from stents to having my throat opened by endoscopic balloon dilation. So around once a fortnight I travel from my home in Glen Coe to Inverness to have this procedure done. When my throat is first opened I can eat normal foods like pizza and the like, but as it closes I have to eat much softer food with smaller pieces and then liquids until it is opened again.

I’ve found lots of support on the Crohn’s & Colitis UK Facebook page and even found one or two other people who have Oesophageal Crohn’s, which helps when I have any queries. It’s quite rare – even the doctors didn’t know what was happening – so it’s really good to find support.

CLAIRE WOOD

I

had an Oral Crohn’s outbreak in January 2017. It started out as one or two mouth ulcers and got worse over the course of a week. Eventually I had ulcers all over my lips and tongue and eating, swallowing liquid and talking became impossible. I was admitted to hospital and stayed for a week on 24/7 antibiotics until my symptoms got better.

It was difficult because they ask you all these questions and I couldn’t speak, so I was typing everything on my phone and ringing the bell to show it to them.

As I hadn’t been diagnosed with any type of Crohn’s or Ulcerative Colitis, the medical staff treated it as herpes even though I’d never had a single cold sore.

After a week it cleared up slightly, so I was able to eat and drink, which was good because my weight had dropped to 50kg from 60kg. The hospital wasn’t sure what was happening but I seemed better so I was told I could go home. It was difficult to eat and drink while I was healing – I’ve still got scars on my lips from then, although I haven’t had ulcers since.

The following month, I went into my local hospital to have a colonoscopy, and that’s when ulcers were found in my colon and I was diagnosed with UC. Unfortunately, during that procedure my bowel was perforated, so I transferred to Raigmore in Inverness to have a total colectomy. I spent seven weeks in hospital and my weight dropped to 37kg.

Following my operation, I started to

WHAT IS …

OESOPHAGEAL CROHN’S? Crohn’s of the oesophagus is rare and usually affects people with the disease elsewhere in the body. Chronic inflammation and ulcers are the main symptoms, while some patients will have strictures or fistulas in the throat too. The oesophagus can become narrowed, causing choking and problems with swallowing.

Although managing his condition, Dave remains prone to choking on food

DAVE

I

was diagnosed with Crohn’s when I was 23 (I’m now 46). I’d had a bad duodenal stomach ulcer, which led me to lose three stone in just two weeks. After that I had small bowel flare-ups and could visit the loo 20 times in a morning, which as a police officer was a huge inconvenience.

My diagnosis took about a year to confirm and resulted in my first resection. I was then clear for three years before a hole was found in my small intestine and food and body waste were going into my body cavity.

Again this resulted in an emergency resection at the Royal Hallamshire Hospital in Sheffield.

It was only after that, in around 2004, that I started to notice I was choking on food quite regularly.

I went out for a romantic meal with my wife at a posh restaurant and I choked on an omelette. I turned blue and dropped to the floor, and had to rush to the toilet through a busy restaurant. There, I managed to make myself regurgitate the offending item. I then booked an appointment with my GP, who said it could be Crohn’s related.

I saw my consultant, Professor Alan Lobo at Sheffield Teaching Hospitals, and, after the usual bloods

I CHOKED ON AN OMELETTE AND TURNED BLUE

and endoscopy, I was diagnosed with Crohn’s in my throat, or Oesophageal Crohn’s.

I was placed on infliximab, which seemed to help, and was on that until around a year and a half ago when my body built up antibodies against it. I’m now on Humira and mercaptopurine. However I’m still prone to mild choking sessions at every meal – caused by narrowing of the throat, the oesophageal scarring and active Crohn’s – and there seems no pattern to the food that triggers it, whether it’s meat, fruit or even mashed potato. Yet there are other days when I can eat steak.

I cope with the choking sessions by either rubbing my throat to force the item down or sticking my fingers down my throat to regurgitate it.

Obviously this causes distress to my 13-year-old daughter and to me and my colleagues when I collapse and turn blue, gasping for air. It has happened hundreds of times and I always have a sore throat – although I can go weeks without choking. I don’t like to eat alone now and luckily my supervisor at work has been very supportive.

As well as this, I was diagnosed with a stricture where the small intestine meets the colon, and had to have a third resection at the end of July.

My feeling is that I’ve got this and it’s bad but there are people with IBD a lot worse than me. I find going on the Crohn’s & Colitis UK Facebook pages – and chatting to the other people I’ve met at the hospital – has helped me.

CONNECT • AUTUMN 2018 • 27

DIFFERENT DIAGNOSES

ANTHEA

I

28 • AUTUMN 2018 • CONNECT

WHAT IS …

ECTOPIC CROHN’S? Crohn’s Disease develops in the digestive tract between the mouth and anus. In rare circumstances, it can spread to the vulva or vagina following a fistula in the perineum and/or rectum.

This is known as Ectopic Crohn’s as it occurs outside the digestive tract.

coincidence I had an appointment to see my gastro consultant the following week, but before I got to see him the symptoms had escalated rapidly and I had to see an emergency GP to be given strong antibiotics because I struggled walking. It felt like I

was walking with a tennis ball between my legs, the inflammation was so bad. It turned out that I had cellulitis in my pubis.

My consultant examined me and said: “You’ve got a hole where you shouldn’t have a hole, just above your clitoris.” It was a fistula.

It was terribly sore and the antibiotics were very strong. I had to

AJ LEVY

was diagnosed with Crohn’s when I was 34 – I’m now 52 – and had a bowel resection about a year later. A couple of years on, having tried all of the medication options available at the time, my colon had deteriorated further and I had developed perianal disease. Following removal of more of the intestine I was given a colostomy to try to give the bowel a rest. Within a couple of months of the surgery, the Crohn’s flared again. My consultant tried to put me back on infliximab but I developed lupus-like syndrome, putting me temporarily in a wheelchair, because the antibodies were still present in my body from previous courses of the drug.

Then, around six years ago, I was under six stone, on a liquid-only diet, and could barely walk. My colon was so inflamed and had started to rupture. It needed to be taken out – as well as my rectum, anus and gall bladder. The surgery was very traumatic – it lasted more than nine hours and unbeknownst to me there was a moment where they lost me and had to revive me.

When the surgeon came to see me afterwards, he said that my colon and rectum had stuck to the womb, bladder and other organs.

They tidied it up as best as they could without causing further damage, and gave me an ileostomy.

It saved my life. Within two to four months I was eating again and felt more positive – and I went back to work nine months later.

However, five years on, around 14 months ago, I started getting strange painful sensations in the pubis above the clitoris. It felt bruised and sore. I don’t have periods any more and a procedure a few years ago means that I don’t have a womb lining, but I started to notice some mucky blood.

The GP wasn’t sure what was wrong and sent me for blood tests. By

DON’T IGNORE ANY SYMPTOMS. LISTEN TO WHAT YOUR BODY IS SAYING be on them back to back as further infections would develop as soon as I finished a dose.

Then I realised I had another fistula further back, near where the exit point had been for my anus.

Eventually, after much toing and froing with different consultants, I was told that I might have vaginal Crohn’s, which is where the disease has communicated itself into tissue my colon had been attached to.

Luckily it was in the early stage as I was told if it’s left too long you can start to develop ulcers as the tissue in your labia starts to break down.

I was referred to Professor James Lindsay at the Royal London for a second opinion and because he has extensive experience in related conditions of Crohn’s Disease. He said, “I won’t call it vaginal Crohn’s because you’ve got fistulas in more than one location. I’ll call it ectopic Crohn’s as it is occurring outside of the intestinal tract.” I’ve now been on Humira (adalimumab) injections for two months and my consultant has said it might take six to nine months for any positive effects to be seen.

There has been an improvement but the infections and bleeding are still happening.

I think the most important thing is for people not to ignore any symptoms – just because they are not in the place where they usually are doesn’t mean it isn’t connected to your Crohn’s.

For women reading this, as we get older our bodies change anyway.

If you have Crohn’s the symptoms you have might not be normal. For men, this type of ectopic Crohn’s is not exclusive – so please pay attention to anything unusual. Listen to what your body’s telling you and don’t let your GP or your consultant dismiss you.

AN EXPERT EXPLAINS Dr Christian Selinger, consultant gastroenterologist (and IBD lead) at St James’s University Hospital, Leeds, explains lesser-known forms of IBD

Q Where in the body can Crohn’s and Colitis be present?

Inflammatory Bowel Disease strikes first and foremost in the bowel.

Ulcerative Colitis and Microscopic Colitis are limited to the large bowel while Crohn’s can affect the intestine anywhere between the mouth and anus. In addition Crohn’s and Colitis can lead to inflammation in other body parts – we call these extra-intestinal manifestations. These can occur in the skin, joints, eyes and liver. While these problems from inflammation outside the bowel often flare up at the same time as the bowel, sometimes even when the bowels ‘behave themselves’ the extra-intestinal manifestations can be troublesome.

Q How common is it to have Crohn’s outside the bowel (and is this as a result of the disease spreading)?

It is relatively common for patients with Crohn’s Disease to notice disease

Crohn’s and Colitis Support is a listening service for anyone who needs a safe place to talk about living with IBD. It’s

activity outside the bowel, most commonly in the mouth. For some people mouth ulcers will be the only symptom of their Crohn’s Disease, so this is not necessarily indicative of the disease spreading. Gastroduodenal Crohn’s, which is Crohn’s Disease in the upper gut, is much rarer, but key symptoms include nausea, vomiting and indigestion-like pain. Genital involvement remains a rare complication.

Q Are these lesser-known conditions becoming more common?

Microscopic Colitis is an illness, for example, that we see more commonly these days. Whether that means there are more cases than in the past or whether we are better at making that diagnosis is a matter of debate. In terms of research, Microscopic Colitis receives more attention these days but is still a bit of a Cinderella topic.

provided by volunteers, who all have a personal experience of IBD, who are trained to provide emotional support and a listening ear.

Call 0121 737 9931

MORE INFORMATION Crohn’s and Colitis Support is available from 1-3.30pm Tuesday to Thursday, and 6.30-9pm, Monday to Friday, except English bank holidays.

CONNECT • AUTUMN 2018 • 29

YOUR VOICE OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

Jack Craigie receives his award from Alex Demain’s sister Sophie and Carrie Grant

FAB FUNDRAISERS

Awards acknowledge campaigning achievements of outstanding young people

T

here were a record number of nominees for the third annual Alex Demain Young Fundraiser of the Year awards, which for the first time also recognised individuals who have made a significant contribution to promoting the work of Crohn’s & Colitis UK throughout their lives.

The honours are named in memory of Alex Demain, a vibrant member of the charity’s fundraising team who died in 2015.

The awards were presented by Alex’s sister Sophie and Carrie Grant, an ambassador for the charity and television 30 • AUTUMN 2018 • CONNECT

presenter, at the London WALK IT event in June, where thousands of people came together to raise awareness and funds for Crohn’s & Colitis UK. UNDER-16s WINNER

Jack Craigie

Jack (main picture) was the biggest individual fundraiser at Plymouth WALK IT 2017, reaching a sponsorship total of £1,065 and doubling that amount through securing matched funding from his parents’ employers.

The 15-year-old, who was diagnosed with Crohn’s Disease at the age of 12, completed the 10km route despite

enduring considerable pain in his knees and heels due to Crohn’s and side-effects from his medication.

Before the year was out he was organising his next big fundraiser – a 100-mile cycle from Ilfracombe in North Devon to Plymouth on the south coast.

Jack completed the journey on the same weekend this year’s Plymouth WALK IT took place. His sponsorship total so far has exceeded £2,500.

“I hope children like me with Crohn’s and Colitis will realise they can get better like I did and be able to take part in activities like this,” he says.

Tom Howourth takes a creative approach to fundraising

17-29 WINNER

Tom Howourth

LIFETIME AWARENESS AWARD WINNERS

Tom’s partner Tasha was diagnosed James Conlon with Ulcerative Colitis 14 years ago, Since being diagnosed with Ulcerative Colitis six years ago, James, 27, but the last 12 months have has fundraised for and helped been especially hard for increase awareness of IBD, the couple. Tasha has and is a media volunteer been admitted to for Crohn’s & Colitis UK. hospital four times.

The Toilet, Me and IBD, a “I am lucky enough campaigning website not to be directly James founded in 2015, affected,” says Tom, 28 highlights Crohn’s & (above). “However, James Conlon Colitis UK’s work and has having experienced on a raised more than £20,000. daily basis how hidden diseases can impact those close to you both mentally Ellie Pugh and physically, I want to raise funds Ellie, 13, was diagnosed with severe Crohn’s Disease aged seven and has to help Crohn’s & Colitis UK continue raised more than £6,100 for Crohn’s & their research and increase their Colitis UK. Ellie says she “digs deep” as knowledge of the causes and she battles with the daily challenges of best treatments.” living with the condition, but has vowed to To date, Tom has raised more than keep raising funds and awareness in the £3,200 for the charity by running the hope that one day other people won’t Berlin and London marathons, selling have to suffer. Ellie has featured in several homegrown vegetables, organising a press releases to raise charity beer pong event, and holding a awareness, and her cake and coffee morning with a quiz, most recent project – silent auction and games. He also plans in which her school to run the Chicago marathon in October, held a non-uniform organise a charity football match Ellie Pugh day – raised and generate more inventive fundraising ideas. almost £830.

I HOPE CHILDREN LIKE ME WILL REALISE THEY CAN GET BETTER

GOOD SPORT

Competition winner Louise on dealing with her children’s diagnoses

L

ouise Pearson knew nothing about Inflammatory Bowel Disease until her son fell ill last year. When Matty was hospitalised with an unclassified IBD aged 14, she had to learn quickly. “He started losing weight and suffering from an upset stomach,” explains Louise, 49. “At one point he weighed five-and-a-half stone.”

Several months later, with doctors still unsure whether Matty will need stoma surgery, his sister Michaela, 18, was diagnosed with Colitis.

After a difficult year the mother-of-two was excited to win a cricket bat signed by England international James Tredwell in a competition in Connect’s spring magazine -- especially given the role sport has played in her children’s lives. “Matty trains with his football team when he can,” she explains, “and Michaela recently completed a riding instructor apprenticeship.”

Her advice to parents in the same position? “Stay positive.

Even when things aren’t good, they will get better -- you just have to believe they will.”

CONNECT • AUTUMN 2018 • 31

YOUR VOICE

OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE

READ ALL ABOUT IT TRY THESE NEW PUBLICATIONS TO HELP MAKE LIFE WITH IBD EASIER NEW REPRODUCTIVE HEALTH AND IBD Crohn’s and Colitis may sometimes affect reproductive health, which includes your sexual health as well as fertility. This information sheet is for men and women to find out more about fertility, appropriate contraception options, having periods

(menstruation) and the menopause.

PREGNANCY AND IBD This information sheet is for women and their partners who want to know about the impact of Crohn’s and Colitis on pregnancy. It covers topics including fertility, medications, treatments and tests during pregnancy, looking after your health and

the health of your unborn baby, and the impact of IBD on pregnancy, birth and breastfeeding.

DIARRHOEA AND CONSTIPATION Diarrhoea is one of the main symptoms of Crohn’s and Colitis, and some people also experience constipation. This information sheet looks at why you might experience these symptoms even when you’re in remission, and

contains helpful suggestions to help you reduce and manage your symptoms.

FOR MORE INFORMATION crohnsandcolitis.org.uk/ publications

MINERAL MISSION

Pamela finds a new lease of life after discovering – and tackling – magnesium deficiency

W

hen Pamela Walker was rushed into hospital last year, she thought she was suffering another Crohn’s flare-up.

Shaking, delirious and in pain, she thought she was facing surgery. Instead, after receiving a blood transfusion, doctors discovered her magnesium levels were dangerously low.

Having battled Crohn’s for more than four decades, the

32 • XXXXXX 20XX • CONNECT

idea of a magnesium deficiency made sense to Pamela. “If you’re leaking fluid all the time, it stands to reason that you’re not keeping in everything you should be,” she says. She urges anyone who suffers from Crohn’s or Colitis to consider whether they might have such a deficiency.

Magnesium deficiency is common in IBD sufferers, developing as a result of chronic diarrhoea and vomiting. Symptoms include muscle cramps, irritability, poor sleep and chronic pain.

It can be combated by incorporating foods with a high

magnesium content, such as meat, whole grains and leafy green vegetables, into your diet. Magnesium tablets are also available.

Since taking magnesium supplements and turmeric tablets (the latter of which is a renowned anti-inflammatory), Pamela says her pain has eased, her stomach has settled and her energy levels have been boosted. Even her heartburn is gone. “Before I just put everything down to the fact that I have Crohn’s,” she explains.

“When I was feeling tired and exhausted, I put it down to a bad day. Now I feel more energetic and clear-headed.”

Pamela hopes that opening up about her own experience will help others explore vitamin and mineral deficiencies.

“I discovered this so late – that’s what I don’t want for other people,” she says. “I don’t want anyone else to look back and say, ‘I wish I’d known that sooner.’”

FOOD FOR THOUGHT Finding the diet that works best for you can be one of the best ways to manage your Crohn’s or Colitis – but changing what you eat might lead to a different imbalance.

Other common vitamin and mineral deficiencies include: l Iron l Calcium l Vitamin B12 l Vitamin D FOR MORE INFORMATION See crohnsandcolitis.org.uk/ eating-well for advice on getting the nutrients you need while living with your condition

JUST ASK

THE EXPERTS ANSWER YOUR QUESTIONS ON THE MOVE

Q

I’m going travelling for three months – how can I make sure I get my medication if I’m not around for routine blood tests?

GREVESON SAYS:

SHUTTERSTOCK

If you are travelling for a long period of time and will require blood monitoring for medication you are taking – for example azathioprine, mercaptopurine or methotrexate – this may have to be done in a private medical facility and will incur personal cost to you (the European EHIC card does not cover routine monitoring). Most hotels or travel representatives in the country you are visiting should be able to tell you where the nearest medical facility is. Discuss this with

your IBD team prior to going away. Travel insurance policies will not usually cover routine care such a blood tests and generally only cover any emergency medical treatment you may require.

You must always ensure you tell the travel insurance company about your condition before you travel.

BACK TO BASICS

Q

How do doctors decide whether or not to reverse a temporary stoma?

DR HAWTHORNE SAYS:

Normally there is a gap of at least two months after a non-emergency operation, but this can be six months or more after an emergency where there has been severe infection in the abdominal cavity (peritonitis). This period

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

allows the join to heal and makes a further operation safer and easier. In some situations the team will want to perform imaging of the bowel downstream from the stoma to ensure there are no strictures (narrowings) or other problems that will prevent the bowel being rejoined. There will also be a need to ensure the patient’s nutrition and general health are optimal and active disease is controlled to minimise risks from the surgery. In some cases what starts off as a temporary stoma becomes permanent because it is not considered safe to rejoin, perhaps because of the high risk that the Crohn’s Disease below the level of the stoma will become active again once the faecal stream is passing through the diseased segment

Always tell your travel insurer about your condition

KAY GREVESON Lead IBD nurse specialist at the Royal Free Hospital, London and founder of IBD Passport

of bowel again. Stomas are often formed to divert the faecal stream away from severe perianal Crohn’s Disease. In this situation, closing of the stoma will generally not be possible and most patients will ultimately need to have their rectum removed.

WHAT’S IN AN AGE

Q

Why is there an increased incidence of Crohn’s and Colitis in people over 60?

DR HAWTHORNE SAYS:

The highest incidence of new diagnosis in both Ulcerative Colitis and Crohn’s is in adults aged between 25 and 30, but the conditions can arise in children, teenagers and older adults. In some studies there is a slight increase in patients aged 60 to 65, but it’s still much less common in this age group than in the young. The cause of Crohn’s and Colitis is unknown, but we know that genetic factors seem to predispose to bowel inflammation caused by as yet unrecognised environmental factors.

There is no clear reason why IBD becomes slightly more common in older people. The proportion of the population with Crohn’s and Colitis continues to rise, so there are more older people living with the condition than ever before.

CONNECT • AUTUMN 2018 • 33

MY LIFE

‘ PEOPLE OFTEN THINK THAT BOWLING IS FOR OLDER PEOPLE’ Glenn Williams, 22, is studying towards a master’s in history and represents England at international bowls tournaments. He also lives with Crohn’s Disease I discovered bowling when I was 10 and on holiday on the Isle of Wight with my mum and grandparents. I really enjoyed the bowls games at the hotel, and discovered there was a club just three streets from my home in Stevenage where I could learn how to play properly.

Having Crohn’s hasn’t affected me much. I take mercaptopurine and Pentasa every day and go for a check-up once a year.

I have some joint pain affecting my knees, but it’s hard to tell whether that’s caused by Crohn’s or the bowling.

Eyeing up his next shot: Glenn Williams

Sport was never my thing at school but bowls is not particularly physical, more tactical and skilful. It is competitive, and exciting to play. I first qualified for the National Finals when I was 14, soon after I was diagnosed with Crohn’s Disease. I carried on bowling with a feeding tube in my nose.

Before the diagnosis I was in constant pain from stomach cramps, and going to the toilet a lot. Then I was put on a liquid-only diet for seven weeks, fed into my stomach nasally. I had a rucksack to carry it all around. It was exam time, and I got nine As in my GCSEs and an A* for history.

I am the first member of my family to go to university.

I studied history at Anglia Ruskin University, graduating last year. Now I am doing a master’s at University College London and I want to do a PhD. After that I hope to lecture or work with archives.

34 • AUTUMN 2018 • CONNECT

MY TROPHIES HAVE TAKEN OVER THE HOUSE I play at the Riverain Bowling Club in Hitchin five or six days a week. From September to April it’s indoor season, and the rest of the year we play outdoors. It’s the same game, but bowling on carpet and on grass are completely different.

People often think bowling is for older people, but there are lots of young ones too.

I manage the Hertfordshire County under-25s bowlers, and there are around 30 of us. It is an intergenerational sport, and very sociable.

I play for England in the under-25s. We beat the other UK nations earlier this year.

There’s always rivalry between the Scots and the English teams. They don’t like losing, but then neither do we.

We play local clubs, intercounty and at the national competitions, for which we usually qualify. Last summer I won the England Champion of Champions title, and three of us won the National Triples. I believe I am one of the youngest people to have a senior national title. I keep all my trophies in the living room at home. They have taken over the place, and although she’s very proud of me, Mum doesn’t like dusting them much.

The battle for places on the national bowling team that takes part in competitions such as the Commonwealth Games is fierce. There are only five men and five women selected for that out of half a million UK bowlers.

But never say never. I’ll keep doing my best and see where that takes me.

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

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