WHAT: is Crohn's Disease

Crohn's Disease and Ulcerative Colitis are the two most common inflammatory bowel diseases. Although they mostly affect the bowel they can also cause other non-bowel symptoms (e.g. swollen joints) and often make someone very tired and generally make them feel unwell. More information is available at: https://www.crohnsandcolitis.org.uk/

How did it affect me?

I guess I had always had a bit of a problem since I was a kid with bad abdominal cramps from time-to-time and needing to rush to the toilet, but anything about "bowels" is not widely discussed so I suffered in silence. It did not affect my life too much until in my 30's I had a brief spell of what they called "colitis" which manifested as bloody diarrhoea over the course of two months. The GP had a quick look and referred me to a specialist, but by the time I made it to the hospital it had cleared up and it was left as an unknown episode. But then in December 2007 I started get the "colitis" symptoms again with bloody diarrhoea many times a day and generally feeling quite unwell. This time I was quickly referred for a colonoscopy as cancer was one possible cause. However, it was not cancer but was identified as Crohn's disease.

What is a colonoscopy like?

If you have symptoms of any kind of bleeding in the bowel it is very urgent it gets checked out. My experience of a colonoscopy was not too bad. Most of the people going in before me where having very heavy sedation so that they were unconscious (or did not remember it), but I asked to not be sedated, this allowed me to watch my colonoscopy on the monitor. It was a bit uncomfortable, but nowhere near as bad as the regular abdominal cramps I was having daily. Certainly, not bad enough to put off having one in case you are in any doubt. Essentially, they just pass a flexible tube up your back-passage with plenty of lubrication. When they get to the end of the large-bowel they shined a light at the end of it and I could see it glow through my skin, quite strange! It did feel uncomfortable as they had to manoeuvre around the turns in the large bowel, but as I said earlier, not as bad as abdominal cramps you may have experienced at various times. 

Treatments for colitis?

Colitis is the general term for inflammation in the large bowel that can occur with either Crohn's disease or Ulcerative Colitis. The main difference between the two is that with Crohn's it can affect any part of the digestive system, with Ulcerative Colitis is it mainly the large bowel. The treatments can be somewhat unpleasant. For me this consisted of taking relatively high-doses of steroids which made it hard to sleep and changed my moods (I became short-tempered). I also had to use a foam anti-inflammatory that had to be inserted anally last thing at night, and I found that very unpleasant. But, these treatments did help for a while.

How serious can it get?

My journey with Crohn's (at its worst) was quite short: some people suffer for years, but between December 2007 and August 2008 mine just got worse and worse with odd respites with drugs for a while. By July 2008 I was having to rush to the toilet 20-30 times a day with really bad cramps and bloody diarrhoea, I was having very bad night sweats that completely drenched the bed and I was starting to feel very ill and loosing weight. My GP insisted I went into hospital. In hospital I continued to get worse even though they tried a large number of drug treatments, including a quite expensive immunotherapy treatment that did not work. After about 4 weeks in hospital they told me that if I did not have my large-bowel removed very soon I would die. By this point I had lost 20 kg in weight (3 stone) in the 4 weeks in hospital and could barely walk (I was being taken to the toilet in a wheel chair, not easy when that is 20 times a day). I was so malnourished they were concerned about surgery but I would die without it.

Crohn's disease or Ulcerative Colitis?

The symptoms of Crohn's disease and Ulcerative Colitis can be difficult to tell apart. They can both cause colitis. In my case they were pretty sure it was Crohn's disease from both the colonoscopy and tissue samples. However, later (post surgery) they changed the diagnosis to "inflammatory bowel disease unspecified" ie they were not sure if it really was Crohn's disease or ulcerative colitis. This actually mattered quite a bit for me, because if it was ulcerative colitis there was a good chance that I could have had a reversal after my large bowel removal through what they term an "internal pouch." However, if it was Crohn's disease the chances that this reversal would work long term were very much reduced. In the end I decided to opt for a permanent ileostomy (which required a second operation) as I did not want to have a failed internal pouch due to Crohn's disease.

The toilet's revenge...

So eventually I had agreed to the large-bowel removal. But the hospital toilet that I had abused so much over the course of 4-weeks had one last act of revenge for the trouble I had caused it: the very last time I ever sat on a toilet seat to use it, as it was normally intended,  the toilet seat cracked completely into two so that I slid off it ...