I’ve been so impressed with some of the stories I’ve read on here, I thought I’d share mine.
One of the things i’ve found hardest to deal with over the years is the fact that a)this is a pretty embarrassing disease (pooping yourself will never be cool) and b) Apart for forums like this (well done Adam), I seem to be the only person i know that has this.
I came back from a year in Iraq in 2003 and started seeing blood in my stool. Iraq had been pretty stressful and the conditions pretty terrible at times. Since I felt OK, I decided to ignore it and hope it went away. After 9 months of increased bleeding when I went to the loo, I got up one day whilst on leave and felt like death. I took myself into ER and was diagnosed with pancreatitus. After a few weeks in hospital and all the tests under the sun, they told me it was an unusual type of auto immune pancreatitus that could be treated with steroids. All good and it went away. 3 weeks later, I went yellow like Bart Simpson, so back to ER I went and this time it was a narrowing of my bile duct that had caused jaundice. Again, some strange auto immune trigger. The good news was that since I was on my post Iraq leave, I was able to do all this through the hospital and not the Army, who just kick me out if they new.
6 months on (over Xmas holidays this time!) I’m back in the hospital
with pain and bleeding and after a colonoscopy, this time its Ulcerative Colitis!
They tried all sorts of drugs to stop the bleeding but in the end Remicade was the only thing that worked. I was put on an infusion every 8 weeks which kept me good for 4 yrs. The only bad bit is that I’ve developed some sort of permanent constipation, which sees me on the loo for about an hour every 3 days (no mater how much movicol I take). 9 months ago, the doctor did another colonoscopy and said there were no signs of the disease and took me off Remicade, leaving me on MTX and pentasa. Within a month, it was back with a vengeance and has been for the past 8 months. The doc says there are funding issues with getting me back on remicade so I’ve tried 4 courses of pred, all of which have worked until 2 weeks after the course, when the bleeding starts.
And here I am now. The hardest thing about Ulcerative Colitis is keeping morale up. I’ve gone to extreme lengths to hide this from the Army as I have a good career and am doing well. I take annual leave to visit civilian doctors and almost have a second life established so my UC and the Army never meet. Its been pretty miserable at times. Last time I was in Iraq 2008, I pooped myself and had to get changed behind a wall (fast!) into a spare set on trousers I carried and hid the pooped ones. All added pressure that ‘normal’ people don’t have to think about, never mind having to poop in an operational environment. I find that keeping fit really helps my mentality if nothing else and helps prepare me for the weeks when I’m ill and need to avoid exercise. I’m hoping to get back on the remicade and carry on with my life, as its getting tricky to hide a long term flare.
The best thing in my life is my wife as I don’t have to hide anything when I get home and she is amazingly supportive.
Not sure why i’m sharing all this. I guess, in a strange way, its nice to know you’re not the only one.
Matt’s Story was submitted in the Colitis Venting Area, submit your story too!