HAVING grappled for decades with an invisible and for a long time unrecognised illness, Mark Fry has welcomed groundbreaking research into the fatigue experienced day after day by Crohn’s disease sufferers just like him.
The 42-year-old from Whitworth Road was diagnosed with inflammatory bowel diseases Crohn’s and Colitis when he was just 14, following bouts of sickness.
Over the years the illnesses and their array of symptoms including diarrhoea, abdominal pain, extreme tiredness and unintended weight loss have taken their toll on the father of one, who has had to plan activities and his life in general around the conditions.
But a new IBD Fatigue Rating Scale, the result of four years of research by scientists at King’s College, University College London and Addenbrookes’ NHS Trust in collaboration with charity Crohn’s and Colitis UK, could allow GPs and doctors to better understand patients and improve treatment.
“I was about to do my GCSEs when I started being constantly sick and had diarrhoea,” said Mark, who works for a timber importer in Cirencester.
“It was debilitating and I lost about 6st in six months. I had to have part of my lower colon removed because it was not functioning. At the time it was not even recognised by the Government as an illness.
“When I was 14 I used to love running around and playing football and when this happened I was not able to.
“It’s energy-sapping and it can be painful. Now there are days when I struggle to get to work. But I’ve built my life around it.”
Both ulcerative colitis and Crohn’s disease are long-term diseases that involve inflammation of the gastrointestinal tract.
Colitis only affects the colon, while Crohn’s disease can affect the entire digestive system.
He added: “I have to watch what I eat and I basically take medication that controls my visits to the bathroom. You always have to make sure you’re near a toilet. It can be disheartening.
“It affects your social life. If friends ask if you want to come out down the pub or clubbing you think ‘yes I’d love to but I don’t want to look tired’ and because of the need to use the toilet a lot, a lot of people are afraid to go somewhere they don’t know.”
Despite this, Mark lives in hope that a cure will eventually be found. In the meantime the IBD scale is a step in the right direction.
“In the scale they have a tolerance of one to four, one being fine and four being so tired you can’t get yourself out of bed. I think it will be interesting to see how it can help. And they might actually be able to narrow the fatigue down to what people are eating maybe.
“I hope that even if it’s not in my time that a cure is found.”
l The IBD Fatigue Scale is available on www.fatigueinIBD.co.uk