Dan's Story

My name is Dan and I live in the ever sunny UK. I am 23 and was ostomised 7 weeks ago after almost 2 years of ulcerative colitis. Initially the UC was not too bad and I put it down to food poisoning so did not bother with the doctors for about 2 months. In August 2000 I eventually went to see my local doctor after a weekend of severe sickness and bleeding. A doctor had come out to see me over the weekend and did nothing at all apart from give me something to stop the regularity of needing the toilet (which I later found out you should not give UC patients).

On the Monday I saw the doc and she put me on steroids. At the time I thought that prednisilone was the best drug in the world. That was until I started reducing the dose and things got bad again. She had also referred me to the consultant at the hospital. In between appointments I had all the usual tests such as barium enemas and colonoscopies. You soon learn to hate those doctors with their special "Doctor Who" tubes and the famous words don't worry the tubes are very thin. Yeah sure they are!

Anyway it was not until almost a year of this and the odd blood transfusion and week in hospital here and there that they finally told me what was wrong. Even though they were fairly sure anyway they finally managed to get a biopsy that did not fall apart and they were 99% certain I had UC and not CD. It was at this point the consultant at the hospital put me on another drug as I was not really getting any better with steroids. The drug was an immune suppressant that made me feel 10 times worse, but it gradually helped reduce the frequency of attacks and I was managing to come off the steroids. That was until March 2002. I had a really bad attack and lost a lot of blood and had to go for yet another stay in hospital.

This was the first time in 17 months of having UC I actually got depressed about the whole thing. I had quit my job a few months before as I was told stress could be one of the causes of the attacks. I decided to go back to college and do a course in photography. This meant I could spend loads of time basically doing my hobby. Pretty cool I thought. That was until this massive attack. It was probably the worst I had ever had and started with not being able to get to the toilet quick enough. How scared and embarrassed was I? With that I also quit college as I could not face going back. That weekend I was admitted back into hospital, and the doctors went about the usual routine of IV steroids and blood transfusions. This was when I made my mind up to have the ileostomy and sub total colectomy. I had enough of drugs making me feel ill and the weight I put on, well, I just wanted that gone. I told my consultant that I wanted the operation and he agreed it was probably best as he had no more drugs to try as I am allergic to most of them as they contain aspirin. Typical, sods law. He arranged for me to see the surgeon who I had talked to about a month before as I wanted to explore every avenue open to me.

I saw the surgeon at the beginning of April 2002 and on the 29th April '02 my stoma was born. Unfortunately, a few things went wrong. For reasons the doctors don't know I started to lose a lot of fluid through my stoma and the other end. Almost 9 litres of fluid a day. I was losing it quicker than they were putting in. Also during the surgery the surgeon had problems taking away the bowel. Because of the dose of steroids I was on it had been masking the severity of my UC and my bowel and tendons holding it place were tearing as he tried to remove it. All I can say is I am grateful for anaesthetic. And to think I used to worry about getting appendicitis when I was younger. Three weeks later the surgeon reluctantly let me out on the condition I went straight back if there was any problems and that a nurse came out every day to dress the bottom of my wound which had opened up. Some sort of fistula thingy.

Now I seem to be doing really well. Going back to restart my college course in September and just generally over the moon to feel so much better. I really don't know how you coped for 5 years with it especially being so young. I don't really have any hang ups about my ileostomy. Admittedly in hospital for the first week or so I hated it and would not change the pouch or even look at it when the stoma nurse changed it. But as I started to feel better I realised that this little squashed strawberry thing has changed my life. I don't care who knows about it and if I am asked I will gladly tell all. I really don't see what anyone with a stoma has to be embarrassed about. Last night I actually went to a pub with some mates, something I have not done in about 6 months. Even though I did not stay out very long as I am still a bit nervous about emptying my pouch in a public toilet, plus I am still sore from the op and bending over a loo is very awkward.

If you have any questions just let me know as my stoma nurse says I should talk to other ileostomists. Plus it is good to talk to new people. Something I am not very good at. Well not until I have been to the pub anyway.

Bye for now

Dan

P.S ABBA!!!!

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