Scotland inflammatory bowel disease register set up
- 1 August 2013
- From the section Scotland
The first Scottish register of people with inflammatory bowel disease (IBD) has been established.
Scotland has one of the highest rates of IBD in the world, but no-one knows exactly how many people suffer from the conditions.
Rates in children have risen five-fold since the 1970s.
Register will help experts to track the prevalence of bowel disease and plan health services.
Paediatric gastroenterologist Dr Richard Russell, of the Royal Hospital for Sick Children at Yorkhill in Glasgow, said accurate figures would allow better planning of resources.
He said: "It will give us meaningful figures that we can take to the powers-that-be, to change things for the better."
Inflammatory bowel disease is taking up increasing amounts of Dr Russell's time.
Dr Russell added: "It's the commonest disease we deal with and it is quite debilitating, particularly for children and young people.
"It really has meant that because we don't know how many people have it, we haven't been able to match the resources in anticipation of numbers."
Last year, the captain of Scotland's football team, Darren Fletcher, was forced to stop playing because of a form of Inflammatory Bowel Disease called ulcerative colitis.
He has undergone surgery in an attempt to bring his condition under control.
Dr Daniel Gaya, consultant gastroenterologist at Glasgow Royal Infirmary, said: "Crohn's and colitis typically affect young adults in their 20s and 30s.
"It's right at the point where it has a massive effect on schooling, employment potential, psycho-social health and sexual health."
Ulcerative colitis is an inflammation of the lowest part of the bowel and can affect the entire bowel.
Crohn's can affect the entire digestive system from the mouth to the anus and is characterised by sections of healthy bowel interspersed with sections of diseased bowel.
Both conditions are incurable, and flare-ups leave sufferers tired, under-nourished and suffering bouts of diarrhoea.
"At medical school, inflammatory bowel disease was small print," said Dr Gaya.
"It was one lecture in the curriculum. Now it forms the majority of the general gastroenterology that we see in the West of Scotland."
However, because of the embarrassing nature of the condition, IBD has a low profile and doesn't attract funding for research.
No-one knows exactly how many people suffer from it, although it's clear rates are rising and Scotland has the highest rates recorded anywhere in the world.
"We've seen a very rapid rise in children," said Dr Richard Russell. "There's been a five-fold increase in four decades - and since that study finished three years ago we've seen further cases year on year.
"Now, at the children's hospital in Glasgow, we diagnose more than one new case a week compared to five years ago when we only diagnosed one or two cases a month."
Scotland's high rates of IBD are probably due to a mixture of genetics and environment.
Some people seem to be more susceptible. An environmental trigger causes their immune system to malfunction and attack the body.
Unlike many diseases, affluence also seems to be a risk factor.
"It's a disease of healthier living, cleaner living, appropriate immunisations, early use of antibiotics and refrigeration of foods," said Dr Gaya.
"These all fail to prime you gut against the normal bacteria it would be exposed to at an early age."
There is no cure for inflammatory bowel disease, although drugs, surgery and stem cell transplants have provided long-term remission from the disease in some people.
The new register should provide a clearer picture of the number of people across the UK who have some form of bowel disease.
For more on this story, listen to The Investigation: Inflammatory Bowel Disease on BBC Radio Scotland at 13:30 on Thursday 1 August. It will also be available on BBC iPlayer.