I’m pretty happy I found this website as it is the most positive website I’ve found about ulcerative colitis. I was diagnosed a year ago and I spent too much time reading very negative and depressing accounts by people struggling with ulcerative colitis. This is just not the best path for someone who is newly diagnosed – especially if like me you have to wait four months to talk with a gastro doctor….
As my title reads, I’m an elite athlete – a member of the Canadian National Cyclo-Cross team. So this means I spend a lot of time riding my bike, racing and recovering from racing. When I’m in a ulcerative colitis flare, this can be a bit tricky. The most frustrating aspect of this is that it can sometimes take over half an hour before I can get out the door… I’m constantly having to dash to the bathroom before I can get out and ride. The fascinating thing is that when I’m racing and training, my flare literally disappears. I don’t have to hop off my bike in a panic looking for somewhere to go to the bathroom. It seems as though my digestion system shuts down completely when I ride. So in this way I’m lucky. But it is hard to get in the adequate nutrition and to stay hydrated to train and race properly.
Last year I went on a low residue/low fiber diet during my first flare. This seemed to help. And now I’m in my second very big flare and this tactic has not worked. So I’ve resolved to just eat what I want (though I’ve dropped the flax seed and all bran from my diet…). It is strange some days I feel good with minimal bathroom trips and not a lot of blood in the toilet. But then other days, I can be forced into the bathroom 30 or 40 times. Sometimes I’ll eat and then within 30 minutes I find myself trapped in the bathroom. Other times, my body is fine. And it doesn’t seem to matter what I eat.
I’m interested in hearing from other athletes and how they handle their ulcerative colitis when training, competing and in general life. I find the worst part of this disease is the uncertainty – I never know when I’ll have to go to the bathroom and if I’ll make it… It is pretty downright embarrassing at the age of 38 to even admit to my husband that there are more times than I’d like to remember when I haven’t made it to the toilet in time…
I’ve been in this flare for four weeks now. I’m taking 8,000 milligrams of Salofalk orally. I was using a Salofalk enema but I’m not able to keep this in my body. I’ve been on this new round of medicine for two weeks now – it is hard to know if it is working. I don’t think the flare is getting worse but I don’t think it is getting better either.
Anyway, I’ll try to post regularly here with how things are going and I’m looking forward to connecting with others going through the same thing. I also have my own blogs where I write about my daily life and bike racing – often I’ll write there about life with ulcerative colitis. It is important that we put a public face on this disease and do our best to raise awareness. I am a Canadian spokesperson for the Crohn’s and Colitis Foundation of Canada and on World IBD Day I was on the A Channel talking about IBD and my experiences.
Well, I’m off. All I can really say is that we need to stay positive and I always count myself lucky since I’ve never been admitted to hospital or even had to visit the emergency room. Thanks for creating such a welcoming and friendly site.