Well, it has been a long time since I’ve written on this site. I suppose since I’ve been feeling pretty good, I really just haven’t been thinking about ulcerative colitis. I have been keeping up-to-date with everyone else’s posts and I realized that I need to get busy and write a post… so here goes.
As you can guess by my title, I’m on Imuran. I’m also on Asacol. And for the most part, my body has adjusted well to these medicines. I’ve been in a remission since mid-January and all signs pointed to this being the medicine for me. I’m also doing iron infusions every other week to get my iron up to a normal level for an elite athlete.
Really, everything was going well until I started to train hard again. I began to notice that I was quite fatigued and assumed it was due to the additional load I was putting on my body and really assumed the fatigue would go away as I regained my strength. Well, I have built up some strength but it is nowhere close to where I had hoped to be by now and I noticed that I couldn’t do two long rides back to back. I automatically assumed it was because my ferritin levels were still very low.
But after much poking and prodding of my veins, it turns out that my ferritin is on the way up and is sitting at 58 right now. But what I did learn is that the Imuran is the culprit. Turns out my white blood cell count is too low now. I also learned that my red blood cells are too large. This is called: macrocytosis and is a type of anemia. Apparently this is a common side effect for people on Imuran.
When I found this out, I had a couple of very rough days. I guess I have become emotionally attached to Imuran. It is the drug that has kept me in a remission for longer than I can ever remember and I see it as my only hope in getting my life back. So I’m actually quite afraid of not being on this drug. When my doctor told me that the Imuran was the problem, I immediately started to stress – I really don’t want to go the Remicade or surgery route. But first things first, my doctor took me off of Imuran for three days and has now reduced my dosage from 150 mg a day to 100 mg a day. I’m hoping this will work. I’ve also started taking folic acid since this is very low.
I had more bloodwork yesterday and my white blood cell count is rising – but I don’t know anything about the size of my red blood cells. I’ve started eating more iron fortifying foods like broccoli, raisins, blackstrap molasses and have added in coconut oil since I read that this can be beneficial for people with ulcerative colitis.
As it stands now, well I’m doing my best to feel optimistic. I did get in some excellent rides over the Easter weekend and I do feel better. I am wondering how much of this is psychological though since I do now know that my ferritin level is increasing. But I suppose the psychological component is a big part of feeling better.
I don’t know how long it will take for my red blood cells to normalize or for my white blood cell count to stabilize. Now the concern is that my white blood cell count gets too high.
Anyway, this is where I am. Generally in a good place, but still full of lots of self-doubt. I have to say thanks to all of you for sharing your stories and for commenting on one another’s posts. Where I live there is not a support group for people with ulcerative colitis. I contacted my local chapter of the Crohn’s and Colitis Foundation of Canada and was told in a rather rude email that they did not believe in support groups in this area since it would just be a bunch of people whining and complaining… So I’m very happy to have this web site. (I also don’t think that a support group is for whiners and complainers – but that is another matter altogether.)
I’d be interested to hear anyone’s experiences with Imuran – good, bad and ugly.
Oh, and to brighten your day and to remind you that anything is possible, here is an article about an elite bike racer who has a J-pouch: Dewey Dickey.