May 112015

My Story – Crohn’s Disease – Part 1

I was diagnosed with Crohn’s disease in late 1996 at the young age of 16. I had been ill for the past year, My whole family got a cold but I never recovered so the doctors started running some tests and there were loads of tests before I finally got a diagnosis. I have my dentist to thank as it was him giving me a letter to give to my doctor which put them on the right track as I also had problems with my mouth and gums, This however lead to my first stay in hospital.

I was in hospital for around a week and was pumped full of IV steroids, Antibiotics, Fluids and Nutrients, At this point my weight had dropped to around 5.5 stones (35kg). My main symptoms were stomach pain especially after eating which I wasn’t doing much of and the other was trips to the bathroom, at least 20+ times a day.

When the Consultant gave me the news that I had Crohn’s Disease it come as a relief for 2 reasons.
1. The doctor’s had mentioned cancer and leukaemia
2. They knew what was wrong and how to treat it

When I was released from hospital I was put on Pentasa 1.5grams 3 times a day along with a 4 month course of Prednisolone steroids, I was also given Ensure plus drinks which are like milkshakes but full of nutrients and can be used to replace food. After around 6 months I was back to 9 stones (57kg) which would become my stable weight for the next 15 years. My symptoms had gone back to normal (what’s normal anyway) but in the summer of 1997 I developed an anal fistula.

An anal fistula is a small channel that develops between the end of the bowel, known as the anal canal, and the skin near the anus. Anal fistulas do not generally harm, but can be very painful, and can be irritating because of the pus-drain, it is also possible for formed stools to be passed through the fistula. Around 50% of people with Crohn’s disease will develop a fistula at some point. Most of the time you require some form of surgery to heal a fistula but if you are lucky like me it may heal on its own with the help of some antibiotics to kill any infections. I was told once you get one it never truly heals and will always be there.

What is Crohn’s Disease

So what is Crohn’s disease, well its one of two types of inflammatory bowel disease (IBD) that may affect any part of the gastrointestinal tract from the mouth to anus, the other is ulcerative colitis which only affects the Large colon.
Crohn’s is described as a chronic condition. This means that it is ongoing and life-long, although you may have periods of good health (remission) as well as times when symptoms are more active (flare-ups). At present there is no cure for Crohn’s, but drugs and sometimes surgery can give long periods of relief from symptoms.

If you want more info on Crohn’s Disease or Ulcerative colitis then check out Crohn’s and Colitis UK they have lots of information leaflets and a list of local support groups which are very helpful.

Crohn's - World IBD day poster

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