PROJECT RAISES IBD AWARENESS AMONG GPs
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CONNECT Summer 2017 / No 87 / crohnsandcolitis.org.uk
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HOW NICOLA DAMES TURNED HER OSTOMY EXPERIENCE INTO A SUCCESSFUL BUSINESS
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WELCOME
OUR CONTRIBUTORS IN THIS ISSUE
SIAN PHILLIPS The contributing editor of Connect speaks to Vanilla Blush owner Nicola Dames about her experience of IBD and all that she has achieved since starting up her specialist ostomy underwear business.
ALASTAIR LEVY
PENNIE TAYLOR The journalist and health communications expert talks to parliamentary intern for Crohn’s and Colitis UK, Euan Macfarlane, about landing his dream job and his life before Westminster.
GEMMA BRIGGS The feature writer meets discus thrower Brett Morse, who was diagnosed with Ulcerative Colitis after competing in the 2012 London Olympics and is now training hard for future competitions.
‘A ONE-OFF FUNDRAISER TURNED INTO THREE A YEAR’
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Guest editor Annie Swanston started holding charity events in 2002 as a tribute to her late husband who lived with Ulcerative Colitis
was honoured last year when Crohn’s and Colitis UK asked me to be one of their first community champions. I’ve been raising money for the charity since 2002, when I arranged a golf day in memory of my husband. It was supposed to be a one-off, but we’re now on the fourteenth event – I just enjoyed doing it so much and things escalated from there. I added a charity ball to my fundraising bill around nine years ago, and that became an annual event too. This year I held my first charity lunch. Between all the events, I’ve raised more than £163,000 and counting. My husband Ian was diagnosed with another auto-immune condition, ankylosing spondylitis, in his late 20s, and he also had a rare blood condition. He didn’t develop Ulcerative Colitis (UC) until 1998, after he had two thirds of his bowel removed due to complications from the blood condition. I saw how much of a debilitating effect the UC had – and that it doesn’t only affect the person but the lives of their family around
them. Through my fundraising, I’ve met a lot of other people either living with Inflammatory Bowel Disease (IBD) themselves or with family members living with IBD, and it’s great to be able to support each other and share experiences. In this issue, there are some really powerful stories – on page 16, Nicola Dames talks about some very difficult experiences she’s been through with Ulcerative Colitis and how she’s turned it around and started a successful underwear business. Brenda Meakin speaks too about how she’s turned a very negative episode in her life into a very positive one. See page 20. Crohn’s and Colitis UK is a charity very close to my whole family’s heart, so to raise awareness and support other people is of the utmost importance.
Annie Swanston
CROHN’S AND COLITIS UK is a national charity leading the battle against Crohn’s Disease and Ulcerative Colitis. We are fighting to achieve a better quality of life for the 300,000 people in the UK suffering physically and emotionally from these and other forms of Inflammatory Bowel Disease (IBD). Ultimately, we want to find a cure. For more than 35 years, we’ve been working with and for patients and their families, the nurses, doctors and all those who work in healthcare who treat them, and the policymakers who can bring about change. We provide high-quality information and support to enable people to manage their conditions. We believe people living with Crohn’s and Colitis should be able to live their lives to the full. We won’t stop fighting until we’ve won.
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FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER
DIRECTORY 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: ● help you understand more about IBD, diagnosis and treatment options ● provide information to help you to live well with your condition ● help you understand and access disability benefits ● be there to listen if you need someone to talk to ● 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
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SUMMER 2017
CONTENTS
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Events, volunteering, fundraising, news ... tell us about what you’ve been up to
I AM A TOTALLY DIFFERENT PERSON NOW
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 Jaina Shah 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, Andrew Littlefield Designers John Pender, Raymond Francis Published by Think on behalf of Crohn’s and Colitis UK
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Think, Suite 2.3, Red Tree Business Suites, 33 Dalmarnock Road, Glasgow G40 4LA www.thinkpublishing.co.uk ISSN 2059-8408
20 NOTEBOOK
FEATURES
6 Go your own way Transition guide illuminates the path from paediatric to adult IBD care 14 Research updates Funded projects making progress on treatments and more
16 ‘I wanted to make people feel good about themselves’ Vanilla Blush founder Nicola Dames on her specialist underwear business and the importance of nice knickers 20 Silver lining After being diagnosed with Crohn’s Disease, Brenda Meakin was unable to continue working, but online communities have helped her stay positive in retirement 24 Spin class Family time is the numberone priority for Olympic discus thrower Brett Morse, who lives with Ulcerative Colitis
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YOUR VOICE 32 Read all about it Jake Borrett shares his story on the Readers’ Panel 33 Just ask Experts answer your queries 34 My life Parliamentary intern Euan Macfarlane on landing his dream job
24
YOU CAN GET INVOLVED JOIN US AT OUR AGM
Please see the inside back page
Help us shape our FUTURE together
CONNECT • SUMMER 2017 • 5
NOTE BOOK NEWS FROM AROUND THE UK
GO YOUR OWN WAY
CROHN’S AND COLITIS UK GUIDE AIDS YOUNG PEOPLE AS THEY TRANSITION TO ADULT CARE
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ost teenagers have quite a few pressures on their plate – exams, relationships, annoying parents and spots to name but a few. For young people with Inflammatory Bowel Disease (IBD), there is also the added challenge that at some point in their mid to late teens, they will usually transition from paediatric to adult healthcare. During this time, these young people will be encouraged to start to take more of an active part in
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their medical appointments and treatment. Crohn’s and Colitis UK has put together a brand-new guide to help with the process. Transition: Moving To Adult Care has been written with the support of parents and young people who’ve been (or are going) through transition. The booklet – available to download from the Crohn’s and Colitis UK website – is full of tips to inform and enable young people, and to help allay any nervousness they might be feeling. “Transition is a process and not a one-off event,” says Lisa Whitley, an IBD nurse at University College London Hospital. “As healthcare professionals, we need to be aware of this and allow time and preparation.” The new guide outlines the steps a young person might expect when moving from paediatric to adult care and how to gather the information they might need. There is also a section
“IT’S STRANGE NOT GOING IN WITH HIM” THE MOVE TO ADULT CARE MEANS A STEP BACK FOR PARENTS Christine’s son, Alex, aged 18, recently started attending appointments by himself. She says: “I know his IBD nurse really well, as
he has had the same one since paediatrics. “I was at every appointment for almost 10 years, but this is a sign of him maturing and growing up. I’m still involved, but that will become less and less. As long as he is happy, we’re happy.” Dr Rafeeq Muhammed, consultant paediatric gastroenterologist at Birmingham Children’s Hospital, who advised on the
THE DOCTOR WOULD DIRECT MORE AT ME, NOT MY MUM on feelings and coping strategies, as well as suggestions for where to get more information or support. Nick (pictured left), aged 23, helped in developing the guide by sharing his own experience of making the transition to adult care. “Information from people who’ve been through it is always going to be beneficial if you’re going through transition – the good and the bad – so you know you’re not the only one who has ever faced this. “I started going to appointments on my own two to three years ago, but my mum still drives me in. It was gradual. Your parent says less and less and the doctor directs more at you rather than at them. As long as you’ve got everybody around you working together, that’s what you need.” Moving to adult care helped Nick become more comfortable talking to people about his condition
guide, says: “I think the value of the transition guide is that the more the family can be prepared the better. “When we ask the patient something about their medicine or their condition in the paediatric world, it’s not unusual for the parent to start answering before the child gets a chance. In adult care, they
READ THE TRANSITION GUIDE crohnsandcolitis.org.uk/publications
need to know how to talk about their condition. The booklet can help the patient and their parents know what to expect.” Alex and his mum, Christine
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CHANGES TO EXPECT WHEN MOVING TO ADULT CARE
YOUR CARE SHOULD MATCH YOUR NEEDS YOUR IBD TEAM
Your new IBD team might be quite big. The gastroenterologist (doctor), nurses and any other health professionals you see will specialise in IBD care for adults and young people, but they will know about IBD in children as well.
THE CLINIC
It could be in another part of your usual hospital or a completely different hospital. The waiting area, appointment system and clinic room are geared up for adults. So there won’t be any kids’ books or toys around.
TREATMENT AND CARE
The adult team will want you to be involved in managing and making decisions about your condition. They might ask you more direct questions (rather than your parents). They might go over your treatment and suggest changes (with your say).
GOING INTO HOSPITAL
Once you’re being treated by the adult IBD team, if you need to go to hospital in an emergency, for planned care or an operation, you’ll stay on an adult ward. Let the staff know how involved you want your parents to be in your care and ask about visiting policies.
HAVING AN OPERATION
If you need an operation, it will probably be with a surgeon who specialises in performing operations on adults.
HAVING AN ENDOSCOPY
Once you’re being treated by the adult IBD team, if you need an endoscopy, you’ll have it with sedation rather than a general anaesthetic. It shouldn’t be painful, but it can feel a bit uncomfortable. Because you’re not having a general anaesthetic, you’ll normally go home on the same day. CONNECT • SUMMER 2017 • 7
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IBD UNDER THE SPOTLIGHT FOR GPs PROJECT AIMS TO HELP FAMILY DOCTORS DIAGNOSE AND PRESCRIBE APPROPRIATELY
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nflammatory Bowel Dr Kevin Barrett, a GP Disease (IBD) is the focus from Rickmansworth near of a ‘spotlight project’ Watford who has Crohn’s this year by the Royal Disease, has been appointed College of General IBD clinical champion for Practitioners (RCGP). the spotlight year. The organisation is He said: working with “There’s still a Crohn’s and lack of Colitis UK awareness of to improve IBD among understanding some GPs and of IBD among delays in GPs, to help diagnosis can speed up mean escalating Rachel Fowler diagnosis and treatment.” For one improve the support they in three of the respondents are able to provide for to Crohn’s and Colitis UK’s their IBD patients. 2016 IBD Survey, getting a
diagnosis took more than two years. For one in six, it took more than five years. One explanation is that GPs are likely to see many more people with Irritable Bowel Syndrome (IBS) than with IBD (20,000 per 100,000, compared with 400 per 100,000 respectively). The RCGP project will benefit from the input of an expert project advisory group, made up of patient
and professional representatives. For Rachel Fowler, a patient representative on the project advisory group, getting a diagnosis was “a battle”. She said she had wanted to use her experience to help educate GPs. She added: “I’m really pleased to be involved with this project, which I hope will raise awareness and improve patient experience.”
WHAT GENERAL PRACTITIONERS NEED TO KNOW CLINICAL CHAMPION FOR IBD DR KEVIN BARRETT ON THE PROJECT’S KEY MESSAGES “I am looking forward to raising awareness of IBD in primary care and helping to develop a toolkit to enable GPs to identify patients with suspected IBD, investigate and refer them sooner. Communication between
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IBD teams and GPs is an area we also hope to improve. “Enabling GPs to identify patients who require additional follow-up to assess their risk of complications is another key part of this project. The long-term care
of patients with IBD is important for GPs as the physical, emotional and psychological impacts can have dramatic effects on education, work and family life. “I want this project to be able to help GPs provide better holistic support to patients and their families.”
Dr Kevin Barrett
WORLD IBD DAY CAUSES BUZZ ONLINE
NEW DRUG APPROVED FOR CROHN’S DISEASE
60,000+ VIEWERS JOIN THE ACTION ON FACEBOOK LIVE
STELARA GETS GREEN LIGHT The National Institute for Health and Care Excellence (NICE) has recommended a new biological drug treatment for adults with moderate to severe Crohn’s Disease. Ustekinumab (brand name Stelara) will soon be more widely available in England and Wales for patients who are intolerant or have had an inadequate or lost response to either conventional therapy or TNF-alpha inhibitor therapy (such as infliximab or adalimumab). The recommendation came after Crohn’s and Colitis UK submitted
Ustekinumab is administered by injection after an initial infusion
evidence to the appraisal, and nominated patient experts who made personal statements directly to the committee. The charity explained that having good control of symptoms can have a life-changing effect, enabling people to resume work and other activities. Ustekinumab is already in use for psoriasis and psoriatic arthritis. It works in a different way from other biological drugs currently available for Crohn’s Disease by targeting two
naturally occurring proteins that play a key role in inflammatory and immune responses. A separate appraisal process is being followed by the Scottish Medicines Consortium for Scotland with guidance expected in July. The Department of Health, Social Services and Public Safety in Northern Ireland will consider the guidance from NICE. FOR MORE INFORMATION www.crohnsandcolitis.org.uk
OUR SURVEY SAYS...
MORE THAN 12,000 RESPONSES REVEAL INTERESTING RESULTS
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indings from Crohn’s and Colitis UK’s recent survey have been revealed. Last year’s results directly helped the campaign for more IBD nurses and the accessible toilet sign campaign in supermarkets.
HEADLINE RESULTS ● 95% said that the general public have no or a limited awareness and understanding of IBD. ● 49% were misdiagnosed with other conditions before receiving an IBD diagnosis and 45% of
people’s GPs did not recognise their symptoms, despite these being ongoing for at least six weeks. ● During a flare-up, the first port of call for people during working day hours was their GP, and at evenings or weekends it was the Crohn’s and Colitis UK website. ● 38% of people have experienced isolation and/or loneliness because of their IBD. ● Only 13% of those who
support someone affected by IBD have been offered support themselves. ● 33% of people with IBD either don’t have or don’t know whether they have an IBD nurse.
Three events were broadcast live via Crohn’s and Colitis UK’s Facebook page for World IBD Day on 19 May, tied to the charity’s ‘Live well with IBD’ theme. First, TV presenter and ambassador for the charity Carrie Grant spoke to specialist IBD nurse Isobel Mason and underwent a drug infusion, broadcast straight from hospital. Then paediatric IBD nurse Kay Crook and gastroenterologist Dr Charles Murray chatted about care and treatment for the under-18s. This was followed by specialist IBD nurse Lisa Younge and gastroenterologist Dr Gareth Parkes discussing topics for adults living with IBD, such as diet and lifestyle, and the future of IBD research and medication. Meanwhile, at Crohn’s and Colitis UK’s offices, staff celebrated with a sponsored beard shaving and a #styleitpurple dress code. WATCH AGAIN facebook.com/crohnsandcolitisuk
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POLITICIANS JOIN FORCES FOR IBD
Parliamentary intern Euan Macfarlane in Downing Street
AN ALL-PARTY PARLIAMENTARY GROUP ON INFLAMMATORY BOWEL DISEASE WILL LOOK INTO WORK AND BENEFITS
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embers of Parliament have come together from across the political divide to form the all-party parliamentary group (APPG) on Inflammatory Bowel Disease (IBD). APPGs are formed by MPs and peers in order to promote an important topic. The goal of the APPG on IBD will be to raise awareness of Crohn’s Disease, Ulcerative Colitis and other forms of IBD to ensure high quality,
MPs and staff after the formal launch of the all-party parliamentary group on 19 April
sustainable, patient-centred clinical care, drive pioneering research and reduce discrimination in accessing services across the UK. The APPG has been co-ordinated by Crohn’s and Colitis UK Parliamentary intern Euan Macfarlane. He said: “Having had Crohn’s Disease since I was 16, I know how tough having IBD can be. I really feel that the APPG has the potential to make a difference to the lives of others living with the condition.”
When parliament returns after the general election, the APPG will be looking into how IBD affects the employment and working life of those living with the condition, and their ability to access benefits when necessary. Melanie Onn MP, who chairs the group, said: “It’s great to be joined by dedicated parliamentarians to launch the group. I look forward to working with my fellow APPG members to make sure parliament plays its part to improve
the lives of those who live with IBD.” The group had been due to have its launch meeting on the afternoon of the attack on the Houses of Parliament on 22 March, so the meeting was put back to 19 April. Euan said: “It shook us all, but my colleagues and I were determined we would not be prevented from carrying out this important work.” The APPG’s work follows on from Crohn’s and Colitis UK’s response to the Work, Health and Disability: Improving Lives green paper. More than 5,200 responses to an online survey on the proposals were fed into the response, as was the 2016 survey circulated by the charity.
A BLUEPRINT FOR SCOTLAND SCOTTISH GROUP MAKES PROGRESS IN PARLIAMENT
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he Cross Party Group on Inflammatory Bowel Disease (IBD) launched in the Scottish Parliament back in February, with the aim of supporting the nationwide implementation of Scotland Leading The Way, a National Blueprint for Inflammatory Bowel Disease, to improve the quality of health services for people with IBD across Scotland. At the Cross Party Group’s first meeting, more than 25 key members of the IBD community in Scotland came together, including patients, clinicians and MSPs such as Pauline McNeill, Colin Smyth and Liam McArthur, to raise awareness of the conditions among MSPs and drive forward work around the blueprint. The Cross Party Group aims to meet three times a year with support from Crohn’s and Colitis UK.
Provisional dates for upcoming meetings are 6 September and 6 December. All meetings will take place from 6-8pm in the Scottish Parliament. If you are interested in attending any meetings it is important to register beforehand. GET INVOLVED Contact Nancy Greig at nancy.greig@ crohnsandcolitisuk for more information
IBD TRACKING APP TRIAL SUCCESS
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APP POPULAR WITH SCOTTISH PATIENTS An app developed for patients with IBD to share their health updates with medical staff is now being used by around a third of IBD patients in the Highlands and Western Isles. The app, which was developed with funds from Crohn’s and Colitis UK, enables patients to send data securely from smartphones, tablets and PCs to the NHS Highland health board. Patients’ data is then graphically displayed on a clinical ‘dashboard’, making it easy for medical staff to see if a patient’s symptoms are deteriorating.
RESEARCH funded by Crohn’s and Colitis UK
MAKE YOUR VOICE HEARD PROPOSED CHANGES TO CONSTITUTION Members of Crohn’s and Colitis UK are invited to share their views on suggested revisions to the charity’s constitution, which are due to be voted on at the AGM on Saturday 2 September. For those members unable to attend, the event will be streamed live online. The proposals involve streamlining the constitution into a single, easier-to-read document. If you would like to know more and take part in this review, please contact Jane Roberts, governance officer, on jane.roberts@ crohnsandcolitis.org.uk or by post (see page 5 for address) by 10 July 2017. For more information, including how to participate in the AGM online, see crohnsandcolitis.org.uk
CAN’T WAIT CARD TURNS 30 CHARITY STAFF CELEBRATE IN STYLE It was back to the 1980s in St Albans as Crohn’s and Colitis UK staff pulled on their leg warmers and donned their best neon to celebrate the Can’t Wait Card’s 30th anniversary. Launched in 1987, the card helps members access toilets easily when out and about.
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VOLUNTEERS MAKE AN IMPACT UPDATES FROM ACROSS CROHN’S AND COLITIS UK’S LOCAL NETWORKS
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here are 50 teams of Crohn’s and Colitis UK volunteers representing the charity across the country – raising awareness of IBD, developing relationships with local healthcare professionals, fundraising and more. ●●Both East Cornwall and West Devon and Durham and Wearside local networks held successful fundraising balls, raising almost £13,000 between them. Karl Taylor, a local supporter of Crohn’s and Colitis UK in Durham and Wearside, helped organise a black-tie dinner. “Putting on the event helped raise awareness of the conditions locally,” says Karl. “Alongside promoting the event to members, we put up posters in hospitals, GP surgeries, places of work and other local community hubs.
While selling raffle tickets at my work I came across colleagues who have, or whose family members have, IBD.” ●●Bristol, Bath and North Somerset ran three educational talks given by medical professionals at local hospitals. More than 250 people attended. Speakers included IBD nurse specialist Aileen Fraser and consultant gastroenterologist Dr Tom Creed at University Hospital Bristol, covering
topics that included research, fatigue and IBD support services. ●●Both the Leeds and Mersey networks supported successful Family Days in conjunction with the national Crohn’s and Colitis UK team. Additionally, the Leeds team raised and awarded a £16,000 grant to the Leeds Teaching Hospitals. In Northern Ireland, the local team secured the stately parliament buildings at Stormont as a meeting venue.
JOIN YOUR LOCAL TEAM YOU CAN MAKE A HUGE DIFFERENCE AS PART OF A NETWORK IN YOUR AREA It’s “rewarding, interesting and challenging,” says Tony Walmsley, coordinator of the Bristol, Bath and North Somerset Local Network. “I wanted to help others who are in the same situation as I was in, so volunteering with the charity seemed an obvious way to help others living with IBD.” Each team has a lead volunteer, finance volunteer and awareness volunteers. They often take responsibility for organising events, social media, liaising with healthcare professionals, producing newsletters, fundraising or promotion and publicity. Typically teams meet six times a year to plan activities, and individuals might spend two to four hours per week volunteering in this role. GET INVOLVED Call 01727 734 475, email volunteering@crohnsandcolitis.org. uk or visit www.crohnsandcolitis.org. uk/volunteering
Volunteers from the Bristol, Bath and North Somerset Local Network
LAST YEAR IN NUMBERS:
50
15,000
volunteer teams
Hosted or delivered events
638
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hours given by
People reached through events
19,500
425 volunteers
Grants given by local teams to local services
£50,000+
WALK IT GATHERS PACE IT’S NOT TOO LATE TO STEP UP IN 2017
COMPANION WEBSITE LAUNCHED
Crohn’s and Colitis UK’s annual WALK IT fundraiser is under way, with events already done and dusted in Plymouth, Manchester, Newcastle and London. There are four events still to come this summer: Swansea (24 June), Edinburgh (2 July), Birmingham (8 July) and Bristol (15 July), and it’s not too late to register as a participant or volunteer.
In May, WALK IT headed to Plymouth for the first time, where more than 260 participants helped raise more than £12,000. Volunteer Bobbie Hooper-Bennet said: “I never dreamt that I would see Plymouth emblazoned with Crohn’s and Colitis UK signs. It was amazing.” TAKE PART OR VOLUNTEER crohnsandcolitis.org.uk/walk-it
NEW TOOL MAKES INFORMATION ON CROHN’S AND COLITIS EASIER TO ACCESS
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he Crohn’s and Colitis Companion was launched earlier this year as a useful resource for anyone with IBD, or for friends and family looking for more information. “The idea was to bring everything together in a user-friendly way,” says Mitesh Gandhi, digital manager at Crohn’s and Colitis UK. “This is all about information and support for the users, and it’s optimised for tablets and mobiles too.” The Companion has sections containing detailed information relating to symptoms and how to manage them; drug, treatment and care options available; living with IBD long-term; and information on where to find support. It also has useful information for carers, including specific information for those caring for a child with IBD. Mitesh says that following feedback, next steps include building a mobile app
so that people can access the information easily on the go. He says: “The Companion is evolving and we want people to review and suggest new content through the feedback function found on each page.” One anonymous review said: “Have just opened the app and found the article on travel insurance extremely helpful. I was only diagnosed a few months ago after an emergency hospital admission. I’ve had to cancel a holiday booked for March already, as my travel insurance wouldn’t cover me. The list of travel insurance companies was very, very useful and will help me immensely for future trips.” Another said: “This is fantastic. I’m newly diagnosed and have loads of questions. This provides quick access to in-depth info on some of the issues I’m experiencing.” FIND OUT MORE crohnsandcolitis.org.uk/companion
The first WALK IT of 2017 gets under way in Plymouth
SIGN OF THE TIMES
AIRPORT ADOPTS INVISIBLE ILLNESS SIGN Grace Warnock, 11, was delighted to see the sign she designed unveiled at Edinburgh Airport in March. Grace’s accessible toilet door sign explains that disabilities can sometimes be invisible and that people should be patient with those using the facilities. Backed by a social media campaign, Grace from East Lothian is trying to get her sign adopted throughout Scotland and beyond. “I am really thrilled to see my sign at Edinburgh
Airport, as so many people come here from all over the world,” said Grace, who was diagnosed with Crohn’s Disease in 2014.
Grace Warnock at Edinburgh Airport
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CHARITY AWARDS RESEARCH GRANTS IBD PROJECTS WILL SHARE £695,304 FROM CROHN’S AND COLITIS UK
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esearchers studying the causes, impact and effective treatment of Inflammatory Bowel Disease (IBD) have received a welcome boost from Crohn’s and Colitis UK, which has committed funding totalling £695,304 to nine research projects this year. The charity has funded more than 81 research projects over the last 10 years in research centres across the UK, and has substantially increased its awards in 2017. Dr Wendy Edwards, research manager, says: “We receive high-calibre applications from researchers across the UK and I am delighted with the range of projects we were able to fund. I hope this research will lead to genuine improvements for people with IBD.”
PROJECTS SET TO RECEIVE FUNDING IN 2017 l Royal Wolverhampton NHS Trust receives £72,653 to look into family planning among women with IBD and their partners in order to identify where extra support is needed. Dr Brookes and his 14 • SUMMER 2017 • CONNECT
team hope to develop better support mechanisms for couples who may delay starting a family due to IBD-related concerns. l Edge Hill University is awarded £48,979 for a study looking at how having IBD influences young people’s friendships as they move into adulthood, and the impact this can have on their mental health. “The more we can discover about whether or not young people with IBD are lonely or have good friendship connections, the better we will be able to consider how to support them,” says Prof Bernie Carter, professor of children’s nursing. l The University of Exeter receives £119,721 to investigate the relationship between depression and Ulcerative Colitis. The aim is to study patient characteristics that might lead to the development of depression – and how depression might affect later UC disease activity, especially relapse. “Understanding the factors that predict depression may enable doctors to identify people at risk of worse UC outcomes, and therefore target treatments more accurately,” says Chris Dickens, professor of psychological medicine.
I HOPE THIS RESEARCH WILL LEAD TO GENUINE IMPROVEMENTS l The University of Oxford receives £25,000 for research that uses innovative laboratory techniques to study rare or difficult-to-access tissue cells, which may be very important in the development of IBD. By improving the detection and understanding of these cells it is hoped that in future they can be targeted with new treatments that will reduce inflammation.
l The University of East Anglia receives £119,762 to investigate whether dietary fatty acids affect IBD. There are two polyunsaturated fatty acids (PUFAs) found in meats, certain cooking oils and spreads that may be converted into chemicals that induce inflammation – and other PUFAs found in fish that may reduce inflammation. “We hope this research will provide new approaches to the control of IBD symptoms
RESEARCH UPDATES RECENT PROJECTS FUNDED BY CROHN’S AND COLITIS UK
How genes affect Crohn’s Disease
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Research will look at issues including how IBD affects family planning and young people’s friendships, and whether fatty acids could influence symptoms
through dietary change,” says Dr Andrew Hart, professor in gastroenterology. l Guy’s and St Thomas’ NHS Foundation Trust is awarded £111,580 to develop a clear way of assessing IBD nutrition in patients and creating a treatment algorithm. People with IBD find that diet can affect their symptoms but that what works for one person may not help another. This research led by Dr Miranda Lomer aims to develop a dedicated pathway for nutritional support for patients with IBD. l The University of Edinburgh receives £74,597 to build on a previous study identifying chemical markers on DNA to distinguish people with IBD from unaffected people. The team aims now to develop a test to show how the disease will evolve by examining these markers. The test will help clinicians predict the need for
surgery or stronger drugs to treat the disease. l King’s College London receives £64,945 to study the immune cells in the gut whose excessive activity causes injury to the intestine in UC. Dr Spencer hopes that if specialist GALT cells in the lining of the gut can be targeted then flares in UC could be better controlled. l The University of Leeds is awarded £58,067 to create a new device for the detection of colorectal cancer in people with IBD. Dr Venkat Subramanian will be looking at improving success rates of detecting colorectal cancer in patients by enhancing a device used in chromoendoscopy, which sprays a blue dye on the bowel mucosa via an endoscope, to enable cancer surveillance in IBD patients. TO FIND OUT MORE or to participate in research studies, see www.crohnsandcolitis.org.uk/ research
Research by the University of Cambridge has identified four genetic variants that affect the severity of Crohn’s Disease in a patient. Surprisingly, though, none of these genes have been shown to affect the risk of developing the disease in the first place. It is already known that Crohn’s Disease is not caused by one single gene – in fact, around 170 genetic variants have been identified. Previously it had been thought that if
someone had enough of these genes they were very likely to develop the disease, and that the more variants they carry the more severe the disease will be. However, the team found that the genetic variants that affect the progression or prognosis of Crohn’s Disease work independently from those that increase the likelihood of developing the disease in the first place. It also means that the way the disease is treated could be changed.
Stomas and IBD: how do people decide and does reality match expectation? Dr Lesley Dibley and her team at King’s College London found that before surgery, patients were concerned about stoma visibility, leakage and smell, and were worried about its impact on relationships and sporting activities. Even though clinicians aimed to avoid stoma surgery in young adults, young adults were not always against the idea of
a stoma, and felt they would have benefited from early discussions. In general, stoma patients found their longterm outcomes were much better than expected, with preoperative concerns proving to be largely unfounded. Additionally, patients’ ability to accept a stoma may be influenced by the amount and quality of information, preoperative preparation and clinical support. Prior contact with others living well with a stoma was the most beneficial in reducing concerns.
CONNECT • SUMMER 2017 • 15
‘I WANTED TO
MAKE PEOPLE FEEL GOOD ABOUT THEMSELVES’ NICOLA DAMES CHANNELLED PERSONAL EXPERIENCE INTO A SPECIALIST OSTOMY UNDERWEAR BUSINESS WORDS SIAN PHILLIPS PHOTOGRAPHS ROBYN RAMSAY
16 • SUMMER 2017 • CONNECT
UNDERWEAR
Nicola Dames’ Vanilla Blush store is located in the east end of Glasgow
E
very parcel of clothing sent out from Vanilla Blush – supplier of fashionable specialist underwear and swimwear for ostomates – contains a handwritten note reading “Wear it with pride!”. It’s a message that comes straight from the heart of the company’s charismatic founder, Nicola Dames. Eleven years ago, after a final flare-up of the Ulcerative Colitis she’d been living with for around five years, Nicola underwent the emergency removal of her entire colon at the age of 29. “After my surgery, the hospital wouldn’t discharge me until I had shown I could walk up the stairs so I told them I had 14 steps to my flat – a porky pie so that they’d let me go home,” she confides. Actually there were 67 steps to tackle up to the Glasgow tenement flat she shared with her husband Simon, and recovery was a slow process. It was during this time that Nicola set about sketching designs for underwear more fashionable than the ranges that existed for people with ostomy bags at the time. “I wanted to make people feel good about themselves and to create a product that was functional on the inside but sexy and attractive on the outside, and that didn’t look too dissimilar to what was on the high street.” Dublin-born Nicola had qualified as a neuro-intensive care nurse in London. In around 2001, she started passing blood and went to the doctor. She was eventually diagnosed with proctitis or, as she describes it, “just a little bit of inflammation of the tail end. I thought I was fine after that. It had cleared up. I was great.” At her next referral she returned jauntily to “the good-looking gastro guy”. She recalls: “I asked him, ‘Do you remember me?’ and he said ‘No, but I’ll
AFTER MY SURGERY I TOLD A PORKY PIE SO THAT THEY’D LET ME GO HOME CONNECT • SUMMER 2017 • 17
UNDERWEAR probably remember your bum!’ I was mortified, I wanted the ground to open up and swallow me.” It was then that Nicola became aware of the implications of her IBD. “Suddenly I went from being a healthy person to having to take nine tablets a day. I was young and this was a major commitment.” But she says she got on with it, and notwithstanding the panic-causing repeated dashes to the toilet during flare-ups, for five years she was relatively OK. “I met a guy, a secondary school teacher, and he asked me to marry him when I was full of steroids and the biggest Michelin Man you could ever meet and I thought ‘OK’.” Newly married, in 2005 Nicola and Simon took off to Murcia in southern Spain where they ran a market stall selling jewellery, leather and handbags they had imported from Morocco and the UK. Nicola’s GP had blithely told her that in order to get pregnant she couldn’t take the drugs she was on. “So I took her word as gospel and, instead of going to the gastro person, I took the GP’s opinion and started to come off my medication myself,” says Nicola. She says she was all right for six months but then weaning herself off her medication caught up with her. “One day I suddenly remember that urgency [to go to the toilet] came on me again and I started panicking. Not long after I ended up being hospitalised in Spain. They said that the colitis was really bad and that I needed to go on other treatments instead.” The pair decided to move back to the UK and settle in Glasgow, near to where Simon grew up. “I remember going to see the gastroenterologist and he said ‘Listen, if you had stayed on your medication there was an 80% chance that you would have stayed
MY CHILDREN HAVE ONLY EVER KNOWN MAMMY WITH A STOMA 18 • SUMMER 2017 • CONNECT
MODEL BEHAVIOUR: REAL-LIFE OSTOMATES STRUT THEIR STUFF Vanilla Blush exclusively uses people with ostomies to model its underwear – and it’s a brand new experience for many of them
SCOTT SMITH UNDIAGNOSED ULCERATIVE COLITIS LED TO BOWEL CANCER
I met Nicola through an ostomy group and she asked if I’d like to be part of the next shoot. It was fun and a privilege to meet other ostomates. You can have a stoma and still be sexy.
SANDRA FARMER DIAGNOSED WITH UC IN 2008; GOT A BAG IN 2013
Modelling with Vanilla Blush was amazing. I’d never felt more comfortable in my own skin – everyone was lovely and made me feel great about myself and how I looked.
JESSICA KITCHENER UC LED TO AN EMERGENCY ILEOSTOMY THREE YEARS AGO
I was 16 when I had my ileostomy – three years ago now. I’d done some modelling for a friend who was studying photography and it was great fun, so I was happy to get involved.
in remission. What your GP told you was incorrect. You can have children and be on 5-ASA [aminosalicylic acid] drugs. However, coming off those drugs, there is an 80% chance you will never get back to the state of remission’. “The thing about Ulcerative Colitis for me personally was I only ever displayed the symptoms and the feelings when I needed the toilet. I would be sweating, feeling sick, and I’d be sat on a toilet ... sometimes for 15, maybe 20, minutes and felt as if I wanted to die. But as soon as my body started to relax and there was nothing else to expel I almost got a new lease of energy,” Nicola says. “I think that’s why sometimes people think you are almost having a laugh or you are faking it.”
In March 2006 she had the surgery to remove her colon and when she was at home recovering the germ of a business idea began to take root. Nicola had spent her summers in her youth and early 20s working at what she calls “the Harrods of Dublin”, the renowned department store Brown Thomas. “I learned all the tricks of the trade, knowing how to size people – and also how to conduct oneself in a prestigious department store.” Her retail experience combined with her love of fashion and her medical background gave her the confidence to pursue Vanilla Blush, creating attractive underwear with the pouches that people who have had colostomies, ileostomies and urostomies need.
Nicola Dames shows off some of Vanilla Blush’s underwear range
WHY SHOULD WE NOT HAVE A SHOPPING EXPERIENCE LIKE ANYBODY ELSE? While Nicola busied herself with fabric shows, designs for the underwear and ensuring it passed the required quality grading, Simon had moved from teaching into journalism. His media contacts proved very useful for Vanilla Blush’s launch in 2008. Simon put together a press release and the news snowballed. ITV called, asking if Dr Chris Steele could include Vanilla Blush underwear
in an item on This Morning. Before she knew it, Nicola was on the sofa with Eamonn Holmes launching the range. “We really feel that we set the tone in the ostomy market for others to pull up their socks.” After remortgaging her and Simon’s flat to launch a range of 12 products, the company grew steadily but still as a hobby until 2011, when Nicola decided to get their products listed as class 1 medical devices, which meant they could be registered with the NHS. Roll on to April 2014, Nicola – now with Simon on board full-time – opened the world’s first specialist underwear shop for ostomates, in Glasgow’s east end. The event attracted attention and was attended by
the then Scottish minister for health, Alex Neil MSP, and other dignitaries. “The minister was walking down the high street with three girls, who had all been through surgery, holding knickers. We were normalising the fact – why should we be made to feel different? Why should we not have a shopping experience like anybody else who goes into a boutique?” The formula has worked. In just nine years the business has gone from strength to strength. Nicola was named one of 20 Women to Watch in business by Scottish Business Insider in 2016 and also won a £50,000 award from the Scottish government’s EDGE funding programme. Annual sales have reached £1.4m and Vanilla Blush now has around 10,000 customers in the UK and beyond. It also has distributing partners in Europe and is looking to spread to America, Japan, Australia and New Zealand. This is a far cry from the hobby it started as. “The business is now full-time, morning, noon and night – I eat, sleep and breathe it. But whether you have an ostomy underwear business, or any business, that’s what business owners experience.” She and Simon also now have a family. “Joseph and Andrew have only ever known Mammy with a stoma and I’ve always said to people to be open with your family and your children especially.” Nicola says she is a member of “all the closed groups” on social media and a particular fan of Ostomy Lifestyle Athletes, for people with a stoma who have an interest in sport. “The one thing that connects us is that we all have a stoma but we all like to dabble in sport,” she says. “My love is cycling. It gives me great mental health peace and it keeps the bones and workings inside your body well-oiled.” She laughs and then makes a more serious point about how her stoma doesn’t stop her from getting on with life. “Some people see having a stoma as a failure of their treatment, whereas I see a stoma as a really good opportunity for people with IBD to live a better life than with a chronic illness.” CONNECT • SUMMER 2017 • 19
SILVER
LINING Social media helped Brenda Meakin find support when she was diagnosed with Crohn’s Disease at the age of 63
‘I
WORDS SIAN PHILLIPS PHOTOGRAPHS PAUL STUART
was a scared little old lady when I was diagnosed with Crohn’s Disease,” says Brenda Meakin, 69, from Basingstoke. “I thought ‘why me, why at my age?’.” But with the support and knowledge she received from her Facebook friends in the #GetYourBellyOut (GYBO) community Brenda says she has “turned into somebody so confident that today I stood in Andover and had a photo taken with me belly out”. A mother of four and grandmother of five, Brenda explains that she’s currently on a mission. Fundraising for Crohn’s and Colitis UK, she has set herself the challenge this year of photographing her belly out in as many places as she can in the UK. “I have given myself a target of 50 but at this rate I’ll probably do a few more. Everywhere I go I find a corner somewhere and my partner Len takes a photo. I don’t do it in the middle of the
20 • SUMMER 2017 • CONNECT
crowd – if you don’t know what I’m doing you might think I’m exposing myself,” she laughs. Even getting out and about is a huge leap forward from January 2012, when Brenda received the surprise diagnosis of Crohn’s Disease. At its worst the disease stopped her life almost completely. “I was virtually housebound for a couple of years,” she says. Back in 1986 Brenda had a polyp removed from her large intestine and attended routine colonoscopies every couple of years afterwards. “Somewhere along the line I got diverticular disease and in around 2009 or 10 they said the diverticular was getting so bad that the scar tissue was closing up my colon.” Just before Christmas in 2011 Brenda began to spot some familiar symptoms. “I had blood when I went to the toilet and that sort of thing so I just assumed I’d got a polyp back again, but the doctor thought it was something nasty. I couldn’t believe it
Brenda says she got great support from the #GetYourBellyOut group
REAL LIVES
I WAS VIRTUALLY HOUSEBOUND – NOW I CAN GO WHERE I WANT
CONNECT • SUMMER 2017 • 21
REAL LIVES when they said it was Crohn’s,” she recalls. Following her diagnosis Brenda initially continued working as a dental practice manager, having previously been a dental nurse. “But I had to give up work probably six months after my diagnosis because I was constantly running to the toilet. I got to the stage where I would be in the middle of talking to a patient or doing something and I’d have to get up and run out to the loo – plus I was on steroids and it was all too much.” For around a year Brenda struggled with worsening symptoms, an uninterested locum consultant and a changing drug routine. One particular medication made her very poorly, giving her pancreatitis. “I was in hospital for 10 days with injected insulin and had to keep that up for around three months until my insulin went back to normal,” explains Brenda. Eventually, Brenda was put on a waiting list for subtotal colectomy surgery in early 2014, although it didn’t happen until September that year. “They took out part of my colon and gave me a temporary ileostomy which would hopefully be reversed at a later date,” says Brenda. “Unfortunately I never recovered from that surgery.” A colonoscopy six weeks later revealed that the Crohn’s was back and in the whole of her colon. To add insult to injury, Brenda’s scar started to split and weep what the consultant said was liquid fat. Her health deteriorated and Brenda was in a lot of pain. A CT scan in February 2015 revealed a large abscess in her surgical wound, which led to more surgery. “After that, I had a big wound, about the size of the top of a mug and a couple of inches deep,” says Brenda. “I had a vacuum dressing on it and had a heavy vacuum pump to carry around as it sucked the muck out of the dressing.” It took until June that year for the wound to close but once the pump was 22 • SUMMER 2017 • CONNECT
Brenda’s clothes swap group finds items a new home and raises funds
off Brenda’s life took a fun turn and she spent the day as a model. After writing a blog for stoma producer Pelican Healthcare she was asked to model its specialist swimwear for people with ostomies. “And I did it – even though I can’t swim and didn’t get wet on the day,” she chuckles. “It was me and two others at a photo shoot in a £5 million house and we tried on everything. It was a fantastic experience and when I saw the brochure I thought ‘Oh my god, I did that?’” Like many with Crohn’s Disease, Brenda has lost weight since her condition’s confirmation. When she was diagnosed with Crohn’s, Brenda was 17 stone and had type 2 diabetes. “I wanted an easy diet so I say ‘be careful what you wish for’. I lost seven and a half stone and my dress size went from a 24 to 14, and has
I ENJOY CLOTHES MORE NOW AND CAN EVEN WEAR LEGGINGS subsequently stabilised at a 16. The weight doesn’t drop off at once so you go through several stages, and buying new clothes gets expensive.” A Facebook fan, after she received her diagnosis Brenda turned to the internet for support. “I just went on and put in Crohn’s and stumbled across hundreds of groups,” she says. “I don’t know how I found the #GetYourBellyOut group but I have learned a lot from that group. When any of us are in hospital we support each other.” Brenda says she’s been to parties and meetings, and that everybody has been so
supportive. “I think the thing that draws us all together is that the founders and the admin are all poorly themselves. That two-way street makes a real difference in a support group.” She recalls: “One day I saw a post by a young lady called Sarah saying that she had clothes that no longer fitted her and would anybody like them. It was like a little switch had turned on in my head, I thought, ‘Oh, I could do something with that’.” So in March 2016 Brenda started a new Facebook group called Bellies Clothes Donate or Swap on which people give away their clothes. All the recipients have to do is pay postage. “Some people say ‘I don’t want the money for the postage, give it to the charity. So we’ve raised £360 for Crohn’s and Colitis UK like that,” says Brenda, adding: “It’s been such a success I can’t actually believe it. I must have about 200 photos on my phone of people who start modelling their new clothes. We’ve also had a wedding dress given away on there, and two bridesmaids’ dresses which somebody snapped up. It’s mainly women as men don’t tend to share their clothes – and I’ve even had some baby clothes from people in the group who have children.” The friends found on the GYBO site remain vitally important to Brenda. “I log on every day; sometimes we go for coffee, or a drink or meal.” Although she has the support of her partner of 20 years, Len, who is a retired building site manager, and her two daughters and two sons, GYBO also fills a gap left by some of the friends who dropped away when she got her diagnosis. “It was mostly work friends to be honest. I am one of those people who tends to be the ‘mum’ of the group and we were a close dental practice. But when I got ill I think I
BRENDA’S THREE TIPS FOR STAYING POSITIVE
Brenda Meakin gets her belly out at Conwy Castle
1 GO ONLINE “Find Crohn’s and Colitis UK as there’s lots of help and information on the website. Obviously as a member the radar key and Can’t Wait Card are very useful too.”
2 DON’T BE ALONE “There are so many people out there who can answer any questions you might have.”
3 FIND A GROUP TO SUPPORT YOU “I recommend #GetYourBellyOut as their knowledge, fundraising and friendship have transformed me.”
messed them about really because I wasn’t reliable. I’d have to cancel at the last minute.” Brenda says she has lost count of the times she had to miss out on events due to her illness. “My family have understood when I’ve had to miss family things, including a wedding. We’ve got two with the same birthday and I managed to go to one and not the other. I hate having to let them down.” In November 2015 Brenda had surgery to remove the rest of her colon and says once her stoma was made permanent she didn’t look back. “Nowadays when I make arrangements to go out, I have my supplies with me. I have always got a bag with me in case I have a leak, an accident, but, touch wood, that doesn’t happen often. “I am a totally different person now. I’m so much more confident because I never get the feeling I used to have when I was out when I’d have to ring Len after half an hour and say ‘Can you come and get me because my stomach’s gone, and there’s only an upstairs toilet and I’ve been up there twice and I can’t make it again’.” Post-surgery, Brenda says she’s had a new lease of life. “I was quite happy with having the bag to be frank – it was much better than having to keep running to the toilet,” she explains. “Apart from a vitamin D tablet I am medication free and I can go where I want, I can walk up the stairs and go to the toilet. “And losing weight had its positives for me. I feel like I can walk into a shop and not get those dirty looks, with people perhaps thinking ‘Oh we’ve got nothing to fit you’. I enjoy clothes more now – and can even wear leggings.” JOIN BRENDA’S FACEBOOK GROUP BELLIES CLOTHES DONATE OR SWAP www.facebook.com/groups/584907964999899 CONNECT • SUMMER 2017 • 23
PROMIXX - THE ORIGINAL VORTEX MIXER
XXXXXXXXX SPORTS
24 • SUMMER 2017 • CONNECT
WORDS GEMMA BRIGGS PHOTOGRAPHS PROMIXX, IAN WALTON/GETTY IMAGES
W
hen Olympic athlete Brett Morse was first told he had Ulcerative Colitis, he says, “honestly, I was actually happy”. It is four years since diagnosis, but relief can still be heard in his voice. “I had done the stupid thing and gone on Google,” admits the 28-year-old. “I tried to self-diagnose and thought I was dying of cancer.” It is a recollection that will be familiar to many people living with Inflammatory Bowel Disease (IBD): months of pain and worry during the long road to diagnosis. Brett, who was the first Welshman to win gold at the UK Championships, was travelling to and from a training camp in Sweden as a professional discus athlete when his symptoms first appeared. “A day or so after I would land home in Wales, my stomach would play up pretty badly, but I put it down to a change of food,” says the athlete,
who has ranked eighth in the world. “In April 2012, I went to the USA and I got really unwell. My friend was in the toilet and he was laughing; it was not normal what was coming out, so I had a bit of a panic attack.” The team doctor agreed there was a problem and gave Brett a letter to take to his GP. “But when I went to him,” adds Brett, “he thought I had haemorrhoids because of all the training that I do and he just gave me some cream.” One of the worst flare-ups came during the exhausting week after his first child was born: “I had a very bad episode and collapsed in the centre of Cardiff. I think it was because of the stress and lack of sleep.” It would be 18 months before the condition was finally confirmed, during which time Brett had competed in the 2012 London Olympic Games. Relief at having an answer to his debilitating symptoms was followed by confusion over what colitis actually was: “I’m a Man United fan and I knew Darren
DESPITE AFFECTING HIS CAREER AS AN OLYMPIC ATHLETE, DISCUS THROWER BRETT MORSE HAS A SURPRISINGLY LIGHT APPROACH TO LIVING WITH IBD
BRETT’S SPORTING COMRADES
1
DARREN FLETCHER English Premier League footballer and Scotland midfielder Darren Fletcher was diagnosed with Ulcerative Colitis in 2011, sparking the ‘Darren Fletcher effect’ – a huge increase in awareness of Ulcerative Colitis. Darren has supported the fundraising initiative United for Colitis and delivered entertainment and educational equipment to young IBD patients at the Royal Manchester Children’s Hospital.
2
DAVE COLEMAN A member of the GB men’s bobsleigh team, Dave Coleman competed at the 2014 Winter Olympics in Sochi. He had previously been a competitive discus thrower with Brett Morse, his training partner. Dave was diagnosed with Ulcerative Colitis in the summer of 2013.
3
LEWIS MOODY A former England rugby union captain, Lewis was diagnosed with Ulcerative Colitis in 2005. A great advocate for people living with Inflammatory Bowel Disease (IBD), Lewis supported Crohn’s and Colitis UK’s IBD, Sport and Fitness Campaign and the fundraising initiative United for Colitis. Lewis also ran the 2014 Virgin Money London Marathon in aid of Crohn’s and Colitis UK.
Fletcher had bowel problems so when I realised it was what he had, I knew it was not good.” Brett found support from another sportsman, the England rugby player Lewis Moody, who also has colitis. “I’d met him at an event, so I contacted him,” explains Brett. “We talked a lot and it put me two years ahead, in my own mind, than I would have otherwise been.” Like Lewis, Brett competes in a power-based sport, which throws up particular challenges. A sudden drop in weight can mean there is less force behind a throw, even though it looks faster; qualification sessions are often held early in the morning when he cannot eat or get off the toilet. “Flying is my biggest nightmare,” he says. “Whenever I know I’m going abroad I get panicky. I was supposed to go and compete in Barcelona once, but I pulled out. I get anxious on smaller flights because there is only one toilet and a queue can form. I’ve now started to get panicky with long-haul flights as I can feel my stomach bloating. I always book the seat closest to the toilet.” Brett has learned to control his symptoms through maintaining a steady diet – “no binge eating” – drinking six to seven litres of water a day and sleeping as much as he can. Coping with an IBD is not only about controlling symptoms with medication – which for Brett is Mezavant – but also in developing strategies for managing the emotional toll of living with a chronic illness. His approach is to take a light-hearted view of the illness with family and friends, including fellow athlete Dave Coleman, a discus-turned-bobsleigh competitor who also has colitis. “Myself and Dave talk about it and laugh,” he says. “We once drove to an event in the same car but the number of times we had to stop was a nightmare!”
MAKING MY GIRLS SMILE IS A BIGGER ACHIEVEMENT
SPORTS
REUTERS / ALAMY STOCK PHOTO, GETTY IMAGES, IAN WALTON/GETTY IMAGES
Brett competing in the European Athletics Championships in 2012
Maintaining a positive outlook is key for Brett as he has two young daughters, aged four and two. The impact of the illness on family life is of greater concern to him than whether it holds back his sporting career. “It has affected them,” he says. “I do not always want to jump out of the car and run straight to the bathroom as I miss the family time.” Nevertheless, he finds it tough being a parent with an IBD. “We might plan to go to the zoo and their mum has to take them on her own because I’m not well enough to go. Sometimes I get up
Family time is very important to Brett
TALKING TO YOUR CHILD ABOUT IBD Many parents feel unsure whether they should share details of their illness with their children. You may be concerned about worrying your child, but equally a child who
can see their parent is unwell and is not given an explanation may get the wrong idea and worry even
INFORMATION SHEET
TALKING TO MY CHILD INTRODUCTION
ABOUT MY IBD
As a parent with Ulcerative Colitis or Crohn’s Inflammatory Bowel Disease (collectively Disease or IBD), you known as talk to your child may be concerned about about whether to to themselves, feeling your illness. Some parents may wish to keep their that it is better for illness particularly if the their children not condition is mild. to know about it, Other about it, especially if they feel that their parents may decide to tell their children information sheet illness may be affecting looks at talking to the family. This your child about your in which you can go about this. IBD, and suggests ways
SHOULD I TELL MY
more. Crohn’s and Colitis UK has produced an information sheet that offers advice to parents, called Talking To My Child About My IBD. It contains suggestions for
ways to tell children about IBD and tailored advice for different age groups.
FOR MORE INFORMATION www.crohnsandcolitis. org.uk/publications
and cannot do what I physically need to. With training I can always go to the gym at a different time, but with kids you can’t – you miss it.” He adds: “I am better with the condition than I was a year ago. Issues are a lot rarer than they once were and I have learned to cope and adapt myself to be able to do a lot more with my girls.” Brett is training hard for the International Association of Athletics Federations World Championships which take place in London this summer. After missing out on a place in the Team GB squad for the 2016 Olympics in Rio due to injury, he’s eager to get back in the game. “It was frustrating, but I am now looking ahead to the World Championships in August and after that the 2018 Commonwealth Games in Australia.” Between training sessions, Brett has also delved into the world of modelling, working with brands including River Island. Family, though, remains his priority. “For me, making my girls smile is a bigger achievement than winning an Olympic medal.”
CHILD?
What are the effects of not telling my If your IBD is not severe, child? or you are in remission, necessary to tell your you may feel that child. You may also it is not particularly if they are young or sensitive. decide not to worry your children, However, with some are very sensitive children, not telling them can cause to problems. Some children something is wrong, tension and stress. Even young children may sense that IBD, or perhaps see particularly if they overhear an adult conversation about you take medication your for it. If your child realises anything may make that you are unwell, the fact that you them misinterpret aren’t telling them be far worse than the truth. The fact the situation. What they are imagining that you are not talking to them that it is a may subject too terrible about it may suggest that you will die from to talk your IBD. Some older about, and they may even believe cancer. children might worry that you have Also, some children can feel deeply hurt happening. It can make them feel very if they are not told about what is anxious and left out, even unwanted. Children often th
CONNECT • SUMMER 2017 • 27
YOUR VOICE OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE
‘MONEY WORRIES MAKE THINGS REALLY TOUGH’
F
inancial support from Crohn’s and Colitis UK’s grants scheme has twice provided relief to 62-year-old Elizabeth Ruffley at difficult times. Diagnosed in 2003, Elizabeth had been experiencing many symptoms of Crohn’s Disease and didn’t fully realise the severity of her condition. “I had been suffering from severe stomach cramps for three months and initially my GP thought I had appendicitis,” says Elizabeth. “I was hospitalised for three weeks and after numerous tests, it was confirmed that I had Crohn’s Disease. I lost two stone during this hospital stint and had to remain on steroids for two months.” It took Elizabeth roughly two years after her diagnosis to feel like she could fully manage
A grant helped Elizabeth Ruffley after she was forced to give up work her condition and she discovered that it affects everyone differently. However, in October 2010, Elizabeth’s health deteriorated rapidly and she discovered that the severity of her flare-ups were directly affected by her hectic lifestyle. “I had a really stressful job in the Department for Work and Pensions and was caring for my sick husband,” says Elizabeth. “I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome, which are extremely difficult to manage alongside my Crohn’s Disease. My health deteriorated to such an extent that I had to leave work at the end of 2011.” Her socialising took a hit too, but Elizabeth worked out over time what did and didn’t affect her IBD. “Almost all
STAFF PROVIDED SUPPORT THROUGH EVERY STAGE OF THE GRANT APPLICATION PROCESS 28 • SUMMER 2017 • CONNECT
alcoholic drinks had a negative impact… apart from prosecco and champagne!” Elizabeth feels lucky to have great support from her gastroenterologist and IBD nurse, who have helped her to navigate life with Crohn’s Disease. She has also found the Crohn’s and Colitis UK online forum to be a crucial platform for sharing experiences and advice with others living with IBD. “I know a lot of people with IBD who don’t have access to the help they need, and because Crohn’s Disease is such a personal illness, they feel like they don’t have anyone they can talk to openly about their experiences,” she says. It was while browsing the Crohn’s and Colitis UK website that Elizabeth first came
across information on the charity’s grants scheme, which she applied to shortly after giving up her job. “I received a grant for bedding and clothing a few years ago and last year I received another grant that helped me buy a new washing machine,” says Elizabeth. “I’ve had personal grants from other charity bodies but
GRANTS CAN MAKE A BIG DIFFERENCE
I
f you’re on a low income and your IBD is creating costs that you’re struggling to meet, Crohn’s and Colitis UK may be able to provide financial support via its grants scheme.
SHUTTERSTOCK
Elizabeth Ruffley, inset, received grants for bedding, clothing and a new washing machine
Crohn’s and Colitis UK’s grants scheme is one of the best I have applied to, due to the simple application process and the support that the staff provides through every stage of the process.” Elizabeth feels that these grants are an important resource for those living with IBD as they provide a form of financial security in times of need. “Crohn’s is a tough condition to live with and often additional stress can
General Grants Grants of up to £500 (£300 for clothes) are available to people with Crohn’s or Colitis for an item or need arising as a consequence of having the conditions. This grant could be used for: • A washing machine or dryer • Beds and bedding • A refrigerator • New clothing due to weight loss/gain • A rehabilitation holiday in the UK
IBD. This grant could be used for: • Books and/or other course material/ equipment • Tuition fees • Additional costs of university/college en-suite accommodation • Travel passes • Retraining courses
Educational & Vocational Grant These are payments of up to £1,000 that help with specific needs that arise as a consequence of having
For further information, application form guidance notes and deadlines, visit www.crohnsandcolitis.org. uk/grants-scheme or call 0300 222 5700
A grant could cover a retraining course
have a hugely negative impact on managing your health. Therefore, the fact that Crohn’s and Colitis UK’s grant is so easy to apply for is really useful,” says Elizabeth. “The grants have been a huge help to me and I would definitely encourage those living with IBD to find out if they can benefit from them in any way.” FOR MORE INFORMATION Find out what help is available at crohnsandcolitis.org.uk/grants
A grant could cover new clothing due to weight loss or gain
YOUR VOICE
OUR MEMBERS GIVE THE VIEW FROM THE FRONT LINE
‘HE ALWAYS WANTED TO REACH OUT AND HELP PEOPLE’ A highly-regarded former trustee of the charity, Martin Gay, died in January. His wife Jan reflects on how important that involvement was to him
M
artin Gay and his helping other people, and became involved in the NACC wife, Jan, joined personal grants committee in the National the nineties. Jan recalls that Association his own experience of IBD for Colitis and impacting on his ability to Crohn’s Disease (NACC, which became Crohn’s and Colitis UK work and his career path was a particular inspiration, and in 2010) in 1979, not long that Martin had a special after the organisation was fondness for being able to formed. He had just been assist with anything relating to diagnosed with Crohn’s young people’s employment. Disease and ill health forced “He was very aware of the him to take time off work. difficulties young people faced Over the years, he was as they made career choices, lucky to be able to manage knowing the impact IBD could his symptoms well through have,” Jan says. diet. The family got a water In 2003, Martin became filter, which they felt made a difference, and Martin would a trustee for the charity and avoid certain foods. was very proud to do that He also made adjustments for a decade, latterly as vice to his career path – Martin chairman. He was delighted, had trained as a doctor and Jan recalls, by how much was working on a surgical progress the charity was rotation but, although he able to make over the years. loved surgery, the rotas were She says: “He used to immensely demanding. After some years spent in other roles, he Martin and became a medical family walking their dog, 2016 consultant with a special interest in disability assessment medicine. Martin was very passionate about
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Martin Gay was a trustee for the charity for a decade and vice chairman for three years
speak at events and was great at expressing the things that made living with IBD difficult, helping to raise awareness and making it relatable to others. Martin was a private person, but he always had the courage to say what he felt needed to be said.” Martin was very passionate about a research project into fatigue related to IBD, and in 2016 had helped with an application for a £2.3m grant to further this and extend it to
other debilitating symptoms of IBD. Martin passed away peacefully on 6 January 2017, aged 66. He was a beloved husband to Jan and father to Amy, Tom and Grace. Richard Driscoll, former CEO of Crohn’s and Colitis UK, said of Martin: “It wasn’t just what he did, but the way he did it. I am honoured to have known Martin, to have worked with him and to have had him as a friend. We will miss him greatly.”
MARTIN HAD THE COURAGE TO SAY WHAT HE FELT NEEDED TO BE SAID
RUNNING FOR YOUR MONEY Pair take on a race every month
A
nnie Scott and Lauren Evans set themselves a challenge at the start of the year – to complete 12 races in 12 months and raise money for three charities close to their hearts. Diagnosed with Ulcerative Colitis just two years ago, Annie was inspired by the support she received from Crohn’s and Colitis UK. “I want to do as much as I can to put back into the charity, because I got a lot of help from them when I was diagnosed,” says Annie. “I want to help myself and others who live with IBD, to try and make life a little easier.”
The two friends are splitting money raised between Crohn’s and Colitis UK, the Scottish Association for Mental Health and Cancer Research UK. After their first race – the 5km Great Edinburgh Winter Run – the pair’s training regime stepped up with longer competitions on the horizon. Just before race number two, Annie fell ill
and ended up in hospital. “I wasn’t sure whether I would make it through the race the following weekend, but I managed to pull myself together.” The duo have already reached their fundraising target of £1,000 and have now decided to double it. Crohn’s and Colitis UK’s WALK IT in Edinburgh is on their calendar for July.
“We have about 30 people joining our team – my dad, my mum, my auntie and lots of friends. Because it’s a walk, people are happier to get involved,” says Annie. She is also involved with the charity’s local organising team in Edinburgh. FIND OUT MORE uk.virginmoneygiving.com/ team/12by12
I WANT TO HELP MYSELF AND OTHERS WHO LIVE WITH IBD
GOING FOR GOALS Charity match pays tribute to Alex Demain More than £7,000 was raised at the second annual Alex Demain Charity Football Day in St Albans. Alex (pictured on the right), who died in 2015, had lived with IBD and worked for Crohn’s and Colitis UK. Alex’s close friend Jamie Fish (left) organised both events, with support from friends and family. “Alex was the kindest, most thoughtful bloke I’d ever had the pleasure of
Annie and Lauren at the Great Winter Run in Edinburgh in January
meeting, and I was very proud to call him my best friend. He spoke a lot about his passion for his work. After he had passed, I did
a lot of thinking about ways I could raise money for the charity. Alex played a lot of football, and represented Sandridge Rovers FC, so I thought it would be good if I could get together a team of his friends and take on Sandridge Rovers in a game.
“None of us imagined we’d get such a turnout or raise so much money last year, but it shows how popular Alex was, and how generous everyone can be.” This year’s event replicated the winning formula, with a raffle, barbecue and bouncy castle.
The teams line up ahead of the 2016 match
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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 CROHN’S DISEASE This booklet has been produced to provide general information about Crohn’s Disease – its causes, symptoms, and treatment – as well as to help people with Crohn’s feel better informed and more able to cope with living with IBD. TRANSITION GUIDE: MOVING TO ADULT CARE We have written this new booklet to help young people when moving, or preparing to move, from paediatric to adult care. It provides suggestions for how young people might manage this transition, and to address common concerns about it for young people and their parents. TESTS AND INVESTIGATIONS An information sheet that looks at some of the medical tests and investigations you may be offered if your doctor suspects you have Ulcerative Colitis or Crohn’s
Disease. The results from these tests can help ensure that you are given a correct diagnosis and that your treatment is based on goodquality information. CHILDREN AND YOUNG PEOPLE WITH IBD: A GUIDE FOR SCHOOLS This leaflet has been produced to provide school staff with some general information about IBD and its likely physical and psychological effects. It also outlines ways that schools can support children and young people with managing their IBD at school. Please note that the following publication has been withdrawn: • Drugs Used in IBD We currently have a number of individual drug-treatment sheets to replace the information in the booklet and plan to produce more over the next year to build on existing publications. FOR MORE INFORMATION www.crohnsandcolitis.org.uk/ publications
Wordsmith Jake Borrett
WRITING TO REACH YOU
Readers’ Panel reviewer Jake Borrett wants to make an impact by sharing his experience
R
ecent graduate Jake Borrett has a way with words. The aspiring writer has penned articles for The Independent and has a popular blog in which he shares creative writing, personal accounts of living with Crohn’s Disease and more. The 23-year-old was diagnosed 10 years ago. After all the support he received, he wanted to give back to the IBD community, so he applied to volunteer for Crohn’s and Colitis UK. The team picked up on his interest in writing, and invited him to join the Readers’ Panel. “I have to review the material in new publications and also contribute quotes of my own experience of living
with Crohn’s,” Jake explains. “I get sent leaflets and information guides by email every couple of months.” Jake has been pleased to see his feedback influence the content of Crohn’s and Colitis UK publications, and urges others to get involved. “I really enjoy knowing that my personal experiences with Crohn’s, whether that’s anxiety or the experience of surgery or medication, are in those guides and that someone who’s been diagnosed can read them. I know I’m making a positive difference. If anyone is thinking about volunteering for the panel, they should.” JOIN THE READERS’ PANEL www.crohnsandcolitis.org.uk/ publications
I KNOW THAT I’M MAKING A POSITIVE DIFFERENCE
JUST ASK PROFESSOR DAVID RAMPTON Professor of gastroenterology at Barts and the London NHS Trust
MEDICATING MUSCLE ACHES
Q
I know that I shouldn’t take ibuprofen tablets, as they affect my IBD, but is it okay to use ibuprofen gel for muscle aches and sprains? PROFESSOR DAVID RAMPTON SAYS
Some patients with IBD can get worsening of their bowel symptoms, and of their IBD, when they take tablets of ibuprofen or other painkillers that are non-steroidal antiinflammatory drugs (NSAIDs). Ibuprofen applied to the skin is absorbed into the tissues below where the gel is rubbed in, but the concentrations found in the blood after ibuprofen gel are considerably lower than after ibuprofen tablets. Further, the lining of the gut isn’t exposed to ibuprofen in patients using the gel. I am not aware of any reports in the medical literature of worsening of IBD by ibuprofen gel. However, if
SHUTTERSTOCK
Be aware of pain relief side effects
THE EXPERTS ANSWER YOUR QUESTIONS
PROFESSOR CHRIS PROBERT Professor of gastroenterology at the University of LIverpool
a patient using the gel gets abdominal pain, diarrhoea or bleeding, it would be sensible to stop using it just in case it is responsible.
SUITABLE SMOOTHIES
Q
Can I drink protein shakes to help with my exercise programme? PROFESSOR DAVID RAMPTON SAYS
Using a commercial protein shake as part of an exercise programme should not do any harm to patients with IBD if they are diluted in water as recommended. If they are taken with too little water, the high concentration of the drink could lead to short-lasting abdominal pain and diarrhoea. There are, of course, lots of natural alternatives to buying commercial protein shakes to boost protein intake. These include homemade smoothies containing, for example, milk, yoghurt, bananas and/or peanut
Protein shakes should be diluted
butter. These are often tastier than commercial protein drinks, may contain a wider range of nutrients and are usually much cheaper.
WORRIED ABOUT THE FUTURE
Q
If I’m diagnosed with mild Crohn’s, will it stay mild or can it become severe? PROFESSOR CHRIS PROBERT SAYS
Both Crohn’s Disease and Ulcerative Colitis may have an unpredictable course, but we can make some general observations. People who present with rapidly progressive (aggressive) disease require early ‘aggressive’ therapies to get on top of their disease. There are several tests that may be used by clinicians to gauge who has more ‘aggressive’ Crohn’s Disease and in some places people are treated with immunosuppressive drugs and/or biological agents early in their disease.
With Ulcerative Colitis, rapidly progressive disease tends to lead to hospitalisation and (hopefully) rescue therapy, after which appropriate maintenance therapy is started to try to prevent a future severe attack. However, most patients do not have rapidly progressive disease. Many people with mild Crohn’s Disease or Ulcerative Colitis can expect to use simple treatments and to enjoy long periods of remission. Others will have fluctuating disease requiring immunosuppressives in the first few years before a more durable remission is achieved. In general, patients who present with mild disease tend to retain this less severe form of disease. Nevertheless, it is important to have regular check-ups with stool tests, x-rays and colonoscopies to ensure that the disease is in remission in order to reduce the risk of complications of undertreated, grumbling Inflammatory Bowel Disease.
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MY LIFE
‘MY MINDSET WAS TO RULE THINGS OUT BECAUSE OF IBD – NOW I HAVE MY DREAM JOB’ Parliamentary intern Euan Macfarlane was diagnosed with Crohn’s Disease at the age of 16. He jumped at the chance to represent those living with IBD – on a national platform I first heard about my dream job last September, as I was coming round from the latest operation. My girlfriend, Lucy, came across an advert for an internship with Crohn’s and Colitis UK. They were looking for someone with an interest in politics who has experience of IBD and knows about research. It was made for me. I grew up in Whitley Bay, near Newcastle. I had bad cramps through my teens, but I wasn’t diagnosed with Crohn’s Disease until I was 16. I was in a band called The Sound Explosion that was signed to a record label, and we toured the UK. I didn’t accept my Crohn’s and tried to block it out by drinking a lot. My intestine ruptured for the first time when I was 20 and I spent a month in hospital. For the next three years the symptoms went away, then came back with a vengeance. In 2010 I developed painful perianal abscesses. I had to lie down for pretty much a year. I met Lucy around then. I couldn’t do much, so we spent our first year together watching TV. 34 • SUMMER 2017 • CONNECT
I read history and politics at Northumbria University and then did a master’s degree. During that time I regularly had to go back into hospital. That’s when Lucy spotted the ad. I work for Crohn’s and Colitis UK in parliament and am based in the office of Melanie Onn, the MP for Grimsby. I manage Melanie’s diary and correspondence – which is funny, as I am notoriously disorganised.
Euan Macfarlane and Melanie Onn MP at the Houses of Parliament
I LOVE WORKING WITH MELANIE IN WESTMINSTER – LIFE IS REALLY EXCITING I didn’t want a colostomy, but the surgeon at the Freeman Hospital told me it would get me up and about, and put me in control of my life. So in 2011 I was fitted with a stoma bag. It took time to get used to it. By then I was 26, Crohn’s had affected my education, and I hadn’t achieved as highly as I would have liked.
I went back and did a night class. Although I got sick again, I worked from home and ended up gaining distinctions. Lucy encouraged me to go to university. My mindset was to rule things out because of my condition. But I thought ‘screw it, let’s just do it’, which has since become my motto.
My role also involves setting up the all-party parliamentary group on IBD, and then producing a report backed up by evidence to inform government policy on work and benefits. I write a Facebook blog, Crohn’s and Colitis in the Commons, which has been read more than 63,000 times. I love working in Westminster, and want to continue when the internship ends. Lucy is looking for a job down here too. Life is really exciting. READ EUAN’S BLOG Visit facebook.com/ crohnsandcolitis inthecommons
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Celebrate our achievements at the
ANNUAL GENERAL MEETING Attend in person or participate 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. Proposals to be addressed at the AGM include suggested revisions to the charity’s constitution. If you would like to know more and take part in the review, please contact Jane Roberts, governance officer, on jane.roberts@crohnsandcolitis.org.uk or by post (address below) by 10 July 2017. 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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FIGHTING INFLAMMATORY BOWEL DISEASE TOGETHER
Changing Lives Together
You can continue the fight against Inflammatory Bowel Disease in an incredibly special way for future generations by leaving a legacy gift to Crohn’s and Colitis UK in your will. By remembering Crohn’s and Colitis UK, you will make sure that critical research continues, and those living with the physical and emotional impact of IBD receive care and support when they need it most. Find out more about legacy giving fundraising@crohnsandcolitis.org.uk 01727 734485
