← Return to Anybody diagnosed with microscopic colitis?

Discussion
Comment receiving replies
Profile picture for bs2 @bs2

@donnagail

I’ve been on budesonide for 2 years and wish I could get off. It certainly helped. A lot. But I hate the weight gain. Still have break through diarrhea that I take Lomotil for. Did you wean off budesonide? I didn’t realize that the adrenal gland stops making cortisol if you’re on budesonide. I eat next to nothing but gained on budesonide. Started entyvio. Guess we have to live with this embarrassing disease for life.

Jump to this post


Replies to "@donnagail I’ve been on budesonide for 2 years and wish I could get off. It certainly..."

@bs2 I was on it for 15 years. Had to take 6 months to wean off. My GI didn't not wean me off properly and I went into adrenal crisis and almost died. What happens with the steriod is that it stops making cortisol that your body naturally produces by the adrenal glands. When I just stop taking it after 1.5 months, I had no cortisol at all in my body because the Budesonide had taken over that function. Not having any cirtisol in my body, it basically went hay-wire and went into crisis mode. It controls so many of our body's functions. I didn't gain weight with it. I watched what I ate, basically ate a Paleo Diet and exercised a lot, mostly hiking and biking. Most MC patients have a high intolerance to gluten and dairy. Coffee and alcohol are the top two triggers. I had chronic diarreah for most of the 2.5 years I have been off Budesonide. Even spent 3 months in Europe last year. After first 2 weeks, I was having chronic diarreah. 70% of every day was spending looking for restrooms. It was pretty traumatizing. I just carried extra clothes and wet wipes every where I went. I didnt make it tona restroom about a dozen times. Just recently, I have stopped having it. I took Imodium about 30 minutes before breakfast, then Citricell with my breakfast. It's a miracle that it helped. Plus I got back on my no gluten, dairy, coffee, added sugars or alcohol. I found NA white wine and great roasted tea replacent for coffee. Although, with all the chronic diarreah for so long my spinkter muscle hardly works at all and I have incontinence issues.