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'My life with Crohn's disease'

Article provided by NHS Choices

Carrie Grant has had the potentially life-threatening bowel condition Crohn's disease since she was a teenager.

It's been more than 20 years since her diagnosis of Crohn's disease, but the mother of three and voice coach still has excruciating stomach pains that stop her from eating for weeks.

"It makes me smile when I hear of people not eating for a few days," she says. "A couple of years ago I didn't eat for 90 days.

"Some sufferers can go for months without symptoms, but I suffer constantly from stomach ache and diarrhoea. I live with low-level pain most of the time, although if I'm struggling I take paracetamol.

"I've lived on nutritional drinks, but I haven't had to do that for the last two years, which is great because they taste horrible."

Carrie says coping with the disease is more of a mental battle than a physical one, but one that she's winning. "Crohn's never goes away, but I feel a lot more in control of it now than when I was younger," she says.

"It used to really get me down, which just made me more ill, but now I'm a lot more positive. As I get older I find that having a positive frame of mind really helps. If I wake up with no pain I think, 'isn't this great', and really appreciate it."

Carrie is one of about 90,000 people in the UK who have the disease, which causes inflammation, ulcers and scarring.

Carrie, who lives in north London with husband David and their daughters, Olivia, Talia and Imogen, started feeling ill in November 1983.

"I had diarrhoea and was losing blood," she says. "Blood tests showed nothing, but the symptoms persisted for two years. By then I was getting skin rashes, lumps down my shinbones and mouth ulcers.

"Then I saw an item on TV about Crohn's disease. I knew it was what I had. When the consultant confirmed it, I felt relief because I thought I may have had cancer."

Read more about the symptoms of Crohn's disease.

It was devastating news for Carrie, who thought her life and career were over. Around this time she met her future husband David.

"Tests showed that I had damage throughout my large and small bowel," says Carrie. "The Crohn's had left certain sections, or 'strictures', withered.

"This left me unable to absorb food through the bowel lining, which caused the diarrhoea and pain. I was put on anti-inflammatory drugs.

"My bowel was in a terrible state, so the next step was a food elimination diet. I was intolerant to dairy products, pineapple, nuts, lamb and caffeine. But my bowel was so damaged that in May 1989 I had to have bowel surgery."

It was the worst time of Carrie's life. Eight inches of her large bowel was removed, and doctors found that her bowel was a lot narrower than it should have been, which is why she was in so much pain.

"I needed colonoscopies every three months to try to alleviate the problem," she says. "There were times when the hospital gave me painkillers, which stopped working after two hours. I knew there was still two hours before they could give me my next injection, and it's agony."

Ten years later, in January 1999 after a colonoscopy, part of Carrie's bowel split and she was rushed to hospital for an emergency blood transfusion.

"It increased my determination not to let it ruin my life," says Carrie. "I'm just grateful for every day when I'm not in too much pain.

"Of course it can be hard, especially with family and friends. I sometimes find it difficult to watch David eat. And if we're out with friends, I have to sit there with a glass of water, smelling their food."

Read more about the treatment of Crohn's disease and the author William Fiennes' experience of living with Crohn's disease.

Article provided by NHS Choices

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