I am looking for others diagnosed with microscopic colitis

I was diagnosed with MC in June. My GI doctor prescribed a 90 day tapering protocol of budesonide. As soon as I started taking it, my symptoms stopped. It was such a relief,

When I stopped, the symptoms recurred but not with such intensity.

The doctor put me back on 3mg/day until my next appointment.

I’m on a restricted diet, no gluten, low fiber, chicken, fish, no dairy.

The restricted diet is hard, but necessary.

I also take Florastor probiotics morning and evening.

I’ve found the Microscopic Colitis Foundation to be a helpful source of information.

Why probiotics? Do they help? My doctor said they would worsen my condition.

@lisalucier Yes. I’ve had cc for over 35 years now. When it first struck (literally), I was a young mom, in my 30’s. Our son was about 5 or 6. The GI I saw was, and still remains, the very best GI I have ever seen, and I’ve seen a lot. (Why do GI’s hate women?). He was very thorough and even looked for other causes as well, like Lyme disease, etc. He said, to the best of his knowledge, I had some type of colitis, but not ulcerative. Definitely not IBS. He performed a colonoscopy and couldn’t find anything wrong. His suggestion was that it might be autoimmune. Fast forward over the years and every single GI I saw refused to believe I had colitis. Every colonoscopy came out perfectly healthy. Every diagnosis was “allergic to food” (I am lactose intolerant, but always have been and know to stay away from anything containing lactose) “IBS”, “you are acting like a hysterical female”, etc. The last GI I saw decided to biopsy several different sections of my colon while dong my colonoscopy. It came back showing I have collagenous colitis, most likely for years and years. I recently found out that it wasn’t until the late 80’s that scientists began researching different types of colitis. Before that the premise was that ulcerative colitis was the IBD in the lower bowel.
Mine has different triggers, and these can even change over time. At first for me, stress was the main trigger, and every summer if when it would come out of remission. Heat stress is the worst stress you can put on your body and I was car pooling around little dudes to their soccer games, tennis, swimming, etc.
My last GI wanted me to take Budesonide, but my pharmacist called me at home to discuss the many reasons why I should not take it. Women over 55 should not take it. Women with osteoarthritis and/or osteoporosis should not take it. Women with Hasimotos thyroiditis should not take it. All of the above are autoimmune disorders, and if you have any others, don’t take steroids! Also, there is a 50% chance of it working on mc and it normally takes 2 weeks before it kicks in. My flare ups last about 2 weeks, then they go back into remission.

So, when it does flare up (and there are so many things that can trigger a flare up, not just in me but everyone), I simply have to ride it out. It’s similar to the effects of the stuff you drink before a colonoscopy for me, but 24/7 for 2 weeks or more. I just drink a lot of Pedialyte, eat green bananas (that’s what I seem to tolerate this year, it’ll change), and I will absolutely lose 20-30 pounds in 2-3 weeks. It’s a horrible way to live.

@lisalucier I just did,,, but another page under your name?

@ndough It’s a terrible disease. I’m sorry you got it so young. I’m 77.

There’s very little research being done on MC. That’s unfortunate for those of us who have it.

I don’t have hashimoto’s and my bone density scans have all been normal.

My GI PA has been so supportive. She responds to my portal messages promptly. Next appointment we will discuss options other than budesonide.

@piemonte you are so very fortunate to have a medical professional that works with you. It’s wonderful that at 77 your bone density is so good, as well as your thyroid. I’m 72 and I have been brutal to my bones since I was a child. I was a dancer for years, and every little injury you get, someone would come running to give you a steroid shot to keep you dancing. In all fairness, I believe this was before they realized how bad corticosteroids are on your bones. Water under the bridge.

Good luck with the Budesonide! I hope it treats you well.