It’s been about seven weeks since I have been diagnosed. At the time my doctor said it’s probably UC, but didn’t rule out Crohn’s 100%.
My Colitis Experience:
My health has been getting better, especially for the past two weeks. I have been taking Lialda at the highest dose, and I started tapering off the prednisone and actually took my last pill yesterday (yay). I am also using probiotics, digestive enzymes, herbs, and vitamins. I started taking valerian root so I could sleep, while the pred was still giving me insomnia. Worked out pretty well, I finally got some rest after not being able to sleep for more than 4 hours straight for months. I can go to sleep and stay asleep now, without any help. I have carefully been trying out different foods that work for me and I have finally started gaining weight too. Bowel movementss have been down to 1 a day for a week now.
There have been weird things too, of course. The night sweats, the random super high fevers. Then 2.5 weeks ago my GP’s nurse calls and asks me how I’ve been feeling because my hemoglobin was low. So I tell her, and realize I’m probably anemic. She said she’d let my GP an GI know. That’s all. They didn’t deal with it any more than this, didn’t tell me whether or not I was indeed anemic. Anyway, I got a really extensive blood work done 14 days ago and saw my GI today.
He told me that he checked for some markers in my blood that would tell him whether I had UC or Crohn’s, but unfortunately all the numbers came back within range. So that means it wasn’t leaning toward Crohn’s OR UC. Huh? He said something like it could still be either or, or it could be a blend, or that some patients develop one and then the other. He did not seem too concerned though, since I was getting better. So I wasn’t concerned either. We focused on the progress. It just sounded like it would become clearer in the future.
But now after thinking about it for a while I wonder… Does anyone have any idea on this? Has anyone had trouble with being diagnosed for either or? Or is my GI just being extra cautious? The main reason he wasn’t sure initially I guess, was that there was no colitis present in my rectal area, but it should have been there to make it a clear diagnosis (according to him). But it could have been inflamed before the colonoscopy though, right? Or even after? Maybe it just wasn’t inflamed yet?? The “markers” didn’t lean toward colitis – is that maybe just because I am already getting better? Does all this make sense to anyone? Should I look for a new doctor? Please let me know your thoughts on this.
I asked him whether I was in remission now, but he said no, too early to say. My blood work STILL showed that I was slightly anemic (“might want to take some iron”) and still showed an elevated white blood cell count. Too bad, I thought I was well enough to be labelled “in remission”. Oh well. I feel pretty damn good anyway. Feels like I got my life back over all! Just finished another semester at school, despite the weeks I have missed because of UC (had a really great Professor who let me stay home and rest) I submitted all my work, only one day late!
written by Rebeka
Submitted in the Colitis Venting Area