Anybody diagnosed with microscopic colitis?
Hi, wondering if anybody here has this for a dx. I have been having a flare for about two months, it is getting a little better with the meds but the doctor wants me to go on a short dose of steriods. I already have a muscle disease so hate to go the steriod route, (plus do not need to gain weight) lol. But if anyone has any hints for me I would appreciate it on how to control this. It is the longest flare I have had.
Susie
Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.
Connect
@szelisk If you don’t mind my asking, how old are you? The reason I ask is because Microscopic colitis was first discovered in the mid-70’s, when the first sub-type (collagenous) was identified). The second (lymphocytic) was identified in 1989. I point this out because the study you refer to is not a major study. It is only one study. Microscopic colitis went for decades after it was identified still being relatively unknown to many doctors, mainly because it’s associated with women. I’ve had it for 35+ years. I am now in my 70’s. I have followed these “studies” and not much research until fairly recently has been done, most still hypothesis. I have collagenous colitis but it is not anywhere in my family history- near or far.
-
Like -
Helpful -
Hug
1 Reaction@szelisk I’m aware.
@kayabbott, I agree. I'm also a clinical researcher; I was diagnosed over 20 years ago with celiac disease. Unfortunately, I have never had a clean biopsy, even being gluten-free. (Several blood and stool tests proving my gluten-free diet is great). Collagenous colitis was diagnosed 10 years later, and now I'm listed as refractory Celiac. Unfortunately, many GI physicians kind of look away and say Oh well. I told my GI I was the problem child, and now he agrees. 🙂
-
Like -
Helpful -
Hug
2 Reactions@ndough, I'm 62 right now. I was diagnosed with Celiac when I was in my mid-30s and MC in my 40s. Unfortunately, I seem to develop unique issues.
-
Like -
Helpful -
Hug
2 Reactions@szelisk Yes. I think that happens a lot. At the time I was diagnosed, the two main choices were ulcerative colitis (not) or IBS (nope). I can’t believe it took 30 years to be properly diagnosed, and that was 10 years ago. Even though my GI wanted to try Budesonide, my regular PCP said she would rather I didn’t take any type of steroids at all, based on a number of reasons. I agreed with her. So, I manage it mainly through diet. Doesn’t always work but it’s the best I can do.
-
Like -
Helpful -
Hug
1 Reaction