Crohn’s and Colitis Month – May 2012
New Crohn’s and Colitis UK Survey
shows 200,000 individuals forced to
give up Sports
Top sportsmen and women offer inspiration
18th April 2012, St Albans, Herts, UK. The first survey of its kind by the charity Crohn's and
Colitis UK suggests that the majority of people living with these challenging inflammatory bowel
diseases (IBD) have been forced to stop taking part in sport or fitness activities, as a result of
their illness at some point.
Of the nearly 1,000 respondents surveyed, 80% stated that they had given-up or reduced their
participation in sport either temporally or permanently, as a result of their symptoms of
uncontrollable diarrhoea, fatigue, joint problems and severe pain. If this figure accurately reflects
the disease limitations faced by all 240,000 people in the UK with Crohn’s and Colitis, the
charity estimates that at some point as many as 192,000 individuals are finding it challenging to
be as active as they once were.
For the 10,000 (mostly young people) diagnosed annually with these incurable, fluctuating
conditions, these findings are particularly poignant when placed in the context of the current
Olympic year.
Overall, 88% of survey responders stated that IBD had reduced their fitness levels, although the
majority (72%) agreed that exercise makes them feel better. However, 23% of those surveyed
stated that exercise worsens their IBD symptoms.
Set against an average survey age of 40, with most having been diagnosed in 2003; the survey
findings make worrying reading for the charity and its 30,000 members.
As a result, Crohn’s and Colitis UK has recruited the support of sportsmen and women with IBD
to offer their tips on how they maintain and return to fitness after a flare-up of their IBD.
The Crohn's and Colitis UK Sport and Fitness Champions include, five-times Olympic gold
medal winning rower Sir Steve Redgrave; former England Captain and most capped England
Flanker Lewis Moody; Norwich City FC footballer Russell Martin; Para-Olympic weight lifter
Crohn’s and Colitis Month – May 2012
Ali Jawad; World Champion power-lifter Henry Tosh; racing-driver Rick Parfitt Junior and
dancer Della Thielamay. Each one has battled with Crohn’s or Colitis and achieved success
despite their fluctuating symptoms, surgeries and medications. They all want to offer hope and
inspiration to their many fellow IBD sufferers who may be struggling to get back to fitness.
Lewis Moody was diagnosed with ulcerative colitis in 2005. To add to his many physical injuries,
Lewis is now throwing himself into the fight to help others living with IBD.
“It’s a pain in the arse,” Lewis admits, “because if it strikes when you’re young and fit, you’re too
embarrassed to talk about it; you just don’t know what’s hit you. Sportsmen are used to coping
with all sorts of injuries, but the pain, feeling knackered all the time, and the humiliation of not
always being able to control your bowels is terrible. Until it hit me, I’d have probably been one of
the guys making toilet jokes about it … but it’s no joke.”
“I’d urge anyone to tell someone and get help, if they think they’ve got it. My life was so much
easier when I finally told my mates on and off the team – I only wish I’d done it earlier. Get to
know the enemy, get information, talk about it – and then take control – it’s your body, and your
life.”
For the Sport and Fitness Champions’ tips, logon to www.ibdsportandfitness.co.uk for their
videos and posters or access them from the main charity website www.crohnsandcolitis.org.uk.
The Crohn’s and Colitis UK Champions will also be taking part in awareness raising activities
around the UK during Crohn’s and Colitis Month in May.
Nearly one thousand Crohn's and Colitis UK members responded to the survey of how their
sport or fitness activities compared before and after having received their diagnosis of these lifelimiting diseases.
Deborah Simmonds of Margate, Kent who was diagnosed with Colitis in 2004 comments, “My
personal fitness has to be managed in a different way now, as I am unable to continue
competitive games but I swim regularly and practice yoga. I also walk and ski where rest stops
can be taken as necessary.”
Deborah’s comments are typical of the survey findings with many people adjusting their sport or
fitness activities to better suit their state of health with walking, jogging or running, attending a
gym, swimming, cycling or taking part in zumba and yoga the most popular activities.
Crohn’s and Colitis Month – May 2012
Richard Driscoll, CEO of Crohn's and Colitis UK is hoping that with the emphasis on sport and
fitness in the Olympic year that the Champions’ support will make a difference. Richard
explains, “The survey findings indicate that there are many reasons why some patients will
struggle to ever regain former fitness levels – sometimes it is fear of not being able to find an
accessible toilet in time. Loss of weight and failure to retain strength may also be an issue in
some sports activities. Sometimes it is the fear of having to “pay the price” of extreme fatigue
afterwards. With conditions that come and go, some people may limit their activities so as not to
“trigger” their IBD symptoms – without realizing just how much they have gradually restricted
their lifestyle and that of their families as well.” ENDS
NOTES TO EDITORS
For further information, photos or case studies, please contact Sarah Rogers or Emily Dean at
the Crohn’s and Colitis UK Press Office on 01252 790507 or email
media@crohnsandcolitis.org.uk or emily@healthcare-pr.co.uk
Crohn’s and Colitis UK - Background Information
Crohn’s and Colitis UK (the working title for the National Association for Colitis and Crohn’s
Disease - NACC) provides a valuable support network and information resource for people and
families affected by Colitis and Crohn’s Disease as well as raising significant funds for research.
Since 1984, its members and supporters have raised almost £6 million and more than 150
research awards have been made to hospitals and universities throughout the United Kingdom.
The charity’s 71 local Crohn’s and Colitis UK Groups across the UK enable its 30,000 members
to meet other people who have these illnesses and share information and experiences.
Crohn’s and Colitis UK also campaigns for better healthcare services and seeks to raise
awareness of these lifelong illnesses and their impact on people’s lives.
The Crohn’s and Colitis UK Information Line (daytime) 0845 130 2233 is available to members
and non-members alike who have queries about all aspects of their disease. The Crohn’s and
Colitis UK Support Line (afternoons and evenings) offers people a chance to speak to a trained
volunteer who has Colitis or Crohn’s Disease. There is also a special Parent-to-Parent Helpline
and a support line available for people claiming Disability Benefit.
Membership of Crohn’s and Colitis UK is open to anyone who has Colitis or Crohn’s Disease,
their friends and families, health professionals and anyone who wishes to support the charity.
Membership costs £12 per year and the charity offers free membership to 16-18 year olds.
The charity’s services are open to all and not reserved for its members.
Crohn’s and Colitis Month – May 2012
What Is Inflammatory Bowel Disease (IBD)?
Ulcerative Colitis and Crohn’s Disease are the main conditions described as IBD. They are
lifelong conditions and most commonly first present in the teens and twenties (25% present in
adolescence; median age at diagnosis is 29.5 years). Men and women are diagnosed in more
or less equal numbers. The estimated number of people with IBD in the UK is 240,000, which
equates to approximately 400 patients per 100,000 population.1
It is important to note that IBD means Inflammatory Bowel Disease which is not the same as
IBS; which means Irritable Bowel Syndrome. The latter is a functional disorder of the digestive
system and is treated in a completely different way. However, some IBD patients may also
have IBS.
The most likely age of diagnosis is between 16 and 29 years of age, although IBD can be
diagnosed at any age, including the very young.
For a breakdown on disease-specific research statistics or more information on the individual
conditions please contact the Crohn’s and Colitis UK Press Office on 01252 790507.
Clinical effects
The key effects of the disease are inflammation and ulceration in the colon and rectum
(Ulcerative Colitis) or anywhere in the gastrointestinal tract (Crohn’s Disease). Crohn’s Disease
can follow either of two patterns – structuring disease (narrowing of the intestine causing
obstruction) or fistulising disease (where the disease creates holes in the bowel wall that allow
the faecal contents to leak out).
Both conditions can produce symptoms of urgency, diarrhoea, pain, profound fatigue and
anaemia, with, for some patients, associated inflammation of the joints, skin, liver or eyes.
Malnutrition and weight loss are common with patients often altering their eating habits to
alleviate symptoms. When diagnosed in childhood (about 25% of all cases) the disease is often
more severe than if presenting in adulthood with major consequences on life-long morbidity.20
IBD follows an unpredictable relapsing and remitting course with significant variation in the
pattern and complexity of the symptoms both between patients and in the individual patient at
different times in his or her illness.
Treatment
Aminosalicylates (5ASA), corticosteroids and immunosuppressive drugs are the mainstay of
medical management for inducing and maintaining remission. They suppress the symptomatic
effects, but the extent to which they alter the natural course of the disease remains unclear.
30% of patients will fail to respond to these drugs or be intolerant of them and these patients
may then be considered for anti-TNF@ biological therapies or surgery. Between 50% and 70%
of patients with Crohn’s Disease will undergo surgery within 5 years of diagnosis.
Crohn’s and Colitis Month – May 2012
Psycho-social effects
Education, employment, personal relationships, social and family life are all disrupted by the
unpredictable occurrence of flare-ups. The frequent and urgent need for the toilet, together with
loss of sleep and the invisible symptoms of pain and continual or profound fatigue, can severely
affect self-esteem and social functioning, particularly among the young and newly-diagnosed.
For understandable reasons, a proportion of patients normalise an unnecessarily limited pattern
of life either due to inadequate control of symptoms from poor medical management or because
of the loss of self-esteem and deep anxiety about losing bowel control if they venture too far
from familiar environments.
Cause
The causes of both Crohn’s Disease and Ulcerative Colitis remain unknown. There is a genetic
predisposition which increases the risk of IBD about tenfold in first degree relatives of an IBD
patient and which probably determines the pattern and severity of the disease in any individual
patient. Much research is focused on understanding the role of bacteria in the gut and the many
different parts of the immune system’s response to external triggers. It seems quite likely that
the trigger for the disease varies between individuals.
Symptoms
IBD can produce symptoms of urgency, diarrhoea, pain, profound fatigue and anaemia, with, for
some patients, associated inflammation of the joints, skin, liver or eyes. Malnutrition and weight
loss are common with patients often altering their eating habits to alleviate symptoms.
References:
1. Crohn’s and Colitis UK publication ‘Quality Care: Service standards for the healthcare of
people who have Inflammatory Bowel Disease’ © IBD Standards Group, 2009
April 2012 – Notes to Editors