Anybody diagnosed with microscopic colitis?

@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.

I've been on and off Budesonide for over 10 years. This last one we did for 6 months with a biopsy while taking it. Unfortunately, the biopsy still showed Colitis, so now we are trying to get approved for Entyro infusions. My diarrhea is bad, but the burning pain is worse. As soon as I started weaning off Budesonide, my diarrhea turned back on full force.

@donnagail I’ve had it for 35+ years. I won’t take Budesonide because it is, basically, a steroid. Not good for women. I stockpile Depends for when it does flare up, and even though I usually won’t make it to a bathroom on time (even at home), they often save my clothes! It is a major change of life. Whenever I go out, I have to pretty much carry a “diaper bag” with me for all of the supplies I need.

@szelisk If you have MC, it’s a waste of time to keep getting biopsies. It does not go away. On some people the flare ups will lessen and become farther apart, on others it becomes worse as you get older. But it does not completely go away. Is your burning pain possibly “diaper rash”? AD ointment helps enormously.

Lympocytic MC usually responds with one treatment of Budesonide; unfortunately, Collagenous doesn't always. Biopsies are needed to confirm before moving treatment to Entyvion (insurance pre-authorization). The burning pain is actually in the back. It feels like I'm wearing a corset with a heating pad on it.

Since I also have Celiac, several other tests needed to be done. These test confirmed refractory Celiac disease as well.

Try Konsyl Psyllium husk fiber. It worked for me
Use everyday for awhile.

I have refractory lymphocytic colitis. I was on Budesonide for about a year with no success and a year on Entyvio infusions with no success. I would take Prednisone for flare-ups and it worked, but I refuse to take it now. due to the horrible side effects I had. I have continuous diarreha. My doctor is now considering Rinvoq. I'm concerned about taking it after reading all the side effects. Has anyone had success with it?

@drandolph1951 Psyllium husk is an excellent source of fiber for treating both diarrhea and constipation. It absorbs water in your digestive tract to form a gel. So if you’re suffering from diarrhea, it traps excess fluid, firms up loose stool and slows down digestion. For constipation, Which I’ve only had once over 40 years ago when I was pregnant, it softens and bulks hard stools.

@szelisk I have collagenous, and Budesonide was not recommended by any of my GI’s, save one, in over 35 years. It’s always been kind of a “ride it out” attitude I get.

@ndough

Can you use it daily to keep the colitis away?
Thanks!