Anybody diagnosed with microscopic colitis?

@donnagail That sounds awful. I was surprised my GI (a GI at my place I'd never seen) said that probiotics are a waste of money except for kefir. I've never heard that before! Also I was taking Budesonide every 4th day and she said what's the point? It only lasts 2 days. Hmm.

@pichulita I have been taking lots of pro and prebiotics for several years. Still got C-diff last fall. Last month E-coli and Noravirus. I think I may have SIBO too. My system is shot. I am looking at doing the Elemental Diet. My primary doctor wants me to wait until next week so he can look into a couple other things. I have had chronic diarrhea more days than not for almost 3 years. A month ago I took a couple Imodiums 30 min before breakfast and 2 Citricell tablets with breakfast. Since I am preparing to do the Elemental Diet I decided to stop taking the before mentioned, and probiotics, enzymes, Vit C, B12 and calcium. It's like my diarrhea just turned off. I really have no idea why. Maybe because I was inflamed, something I was taking was making it worse.

I spent $3000 last fall on a 6 week program with a functional medicine GI doctor of 25 years, that has practiced alternative medicine for 8 years. We were trying to get the good bacteria to take my gut back over. I seemed to be doing better. 4 days after the program ended, the diarrhea came back. Ugh! I am hoping the Elemental Diet will balance my gut as I reintroduce good food. It's for two weeks, but I am adding a 3rd week in case I do have SIBO.

@janstur By the time I weaned off for 6 months, I was taking every 4 days for I think 2 weeks until I could stop. She is probably right which is why they usually have patients take just one a day but if every 4 days works for you then do it. At least you are already in the weaned off phrase. You are still suppressing the cortisol your adrenal glands naturally produce but only to a small degree.

@donnagail
After that appointment, I just went off altogether. So far so good but I'm super paranoid it will come back!

I was diagnosed with collagenous microscopic colitis over 10 years ago (Celiac over 20 years ago). Unfortunately, it has turned into budesonide-resistant collagenous colitis, as well as refractory Celiac. I am now starting Entyvio infusions. Hoping this helps

I have had chronic diarrhea and fecal inconvenience for about 2.5 years, since weaning off Budesonide after 15 years. I am serious, most days of the week was hugging the toilet the past 2.5 years! I changed GI's a few months ago. He told me if I dont want to get back on Budesonide and I have the interstem implant (that doesn't work for me either) he couldn't think of anything else. His advice was to take up to 6 Imodium tablets as needed 30 minutes before a meal and take Citricel. He then handed me a box of tissues. I am sure you can guess why. Miraculously, I think it just might be working!

Budesonside has many side effects. The last straw was when my bone density test results came back. My GI didn't wean me off long enough. What took 1.5 months, shiukd have taken 6 months afterc15 years and I went into adrenal crisis and almost died. I could barely make it to my cell phone to call 911 for the first in my life. I kept collapsing every 2 ft, crawling on the floor to my cell phone. I had had diarrhea and vomiting for a solid 3 hours and my body started shaking uncontrollably. I have never been that weak in my entire life! I was actually dressed to go skiing that morning! Told my husband to go skiing without me, that I must have a stomach bug. Had no idea it was because I had depleted all the cortisol from my body. Your adrenal glands stop making it when Budesonide takes it over. When I stopped the Budesonide, I then had NO cortisol and my body went into crisis mode. I had no idea that Budesonide suppresses your natural source of cortisol from those important 2 tiny glands that sit on your kidneys!