Inflammatory bowel disease affects almost 9,000 new people every year. IAN LLOYD speaks to a Barnet woman whose life was turned upside down by the disease and to a doctor who is tirelessly hunting a cure

It should have been one of the happiest days of Sarah Wise's life. But the photographs from her graduation in 1999 show a very different picture.

For six weeks Sarah had been taking steroids to combat the debilitating and incurable Crohn's disease.

"They were just really nasty photos of a big swollen, puffy face," said Sarah, 24. "The steroids mean you start getting hair on your face and back and you sweat loads. You just lose all your confidence and you feel awful. You can't sleep because it just screws you up."

Some three months earlier the story had been very different. Sarah began to suffer from stomach cramps and diarrhoea. Her weight fell from 11st to 9st in two months and she felt permanently drained. Sarah was eventually diagnosed with Crohn's disease, a chronic inflammatory disease that can affect any part of the gastrointestinal tract from the mouth to the anus, also known as inflammatory bowel disease (IBD).

"I was knee deep in exams at this point," said Sarah, of Bryant Close, Barnet, who was studying Law at Keele University. "You have about four hours in the day when you cannot do anything because you are just so drained and tired.

"The girl in me was secretly quite pleased that I was losing weight but you just don't know what is going on."

Another form of IBD, which most commonly affects the colon (large intestine) or rectum, is ulcerative colitis.

"Crohn's disease normally infects the small intestine causing inflammation and deep ulcers.

"It was a really depressing time for me," explained Sarah. "You don't like to leave your flat. You don't want to be more than a 30-second dash from your toilet just in case because you really don't have any control. Your social life suffers completely.

"You lose friends. It is very taboo and I think it makes people uncomfortable because they don't want to talk about it."

Monday was the beginning of Colitis and Crohn's week, organised by the National Association for Colitis and Crohn's Disease (NACC).

To mark the event, three leading London research departments, including the Royal Free and University College Medical School, have been given grants totalling more than £90,000 to conduct research into IBD.

Dr Satish Keshav, consultant gastroenterologist, is leading the research at the Royal Free, in Hampstead, which focuses on the use of a revolutionary new technique that can repair mutations in genes.

This could lead the way for gene therapy in people with Crohn's. The inheritance of an abnormal gene found in the intestine, known as Nod2, is believed to increase the risk of developing some kinds of Crohn's.

Dr Keshav said: "What we are doing is called genoplasty and it means genes can be reshaped.

"The way it works is that you put a correct version of the gene into a cell in the lining of the intestine which has got a bad version it inherited. If genoplasty works which it does seem to in places then the bad version is cut out and the good version is put in. It sounds like magic. It has been shown to work in the test tube for genes that give you heart disease and we are trying it out for genes that are associated with Crohn's disease."

In the meantime people like Sarah must stick to a strict diet and medication programme to lead a normal life. By Dr Keshav's own admission it will be "years" before genoplasty is tried on humans.

"The drugs keep you in remission and that stops it coming back but it could come back at any time and that is quite scary," admitted Sarah.

"At the moment I am absolutely fine but I do feel like I am living under the threat of it coming back every day."

For more information call the National Association for Colitis and Crohn's disease information line on weekdays between 10am and 1pm on 0845 130 2233.

June 25, 2002 15:30