I am looking for others diagnosed with microscopic colitis

@ndough - hi, and welcome to Mayo Clinic Connect. I thought you might like to join this existing discussion on microscopic colitis, so I moved your post here. Hoping you can meet members such as @esra @cathyas @ncb @anjalima @rozy288 and others.

Will you share some of your story or the story of your friend or family member with microscopic colitis?

@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.

@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.

Hi again. I posted awhile ago. I've been on Budesonide for a few months now for MC. They started the regular 9mg, 6mg, 3mg routine. I then did 3mg daily for awhile and then about 2 months ago I started every other day. As far as effects, I haven't had diarrhea since I was diagnosed (last February?). If anything I'm a hair on the constipated side, but not really. I eat what I want and deal with minor stomach pain. It's a part of my life. I am stubborn and refuse to change my diet. Plus, I am way underweight (97 pounds and used to be 105-110!) and need all the calories I can get. I'm mostly self-regulated because my GI has too many patients and is very hard to reach. There is no "Personal" touch there. I think they're all like that where I live. My initial appointment was fast-tracked by my GP due to weight loss, otherwise it would have been months out! They NEVER check up on me. I had to call to be put on every other day. Very disappointing. I'm considering tapering off to one every two days and see how that goes. I have Osteoporosis and was never told Budesonide is bad for that. I'm wondering how bad that is. I recently had a bone scan that showed the same as I've been for years so...anyway, so sorry for everyone dealing with this. No fun. Out of the blue at 64 after endometrial cancer (caught early and totally gone). I wonder if it's related - like stress of dealing with hysterectomy etc. It came 4 months after. Hmmm.

@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.

@ndough I have had CC for two or three years. I am 64 and my GI did put me on Budesonide because the diarrhea went for months. I was 196 when it started. I am now 143. I couldn’t leave the house because of the watery diarrhea. He tried a different medication last time and it made the diarrhea worse. I have autoimmune diseases. MS, Diabetes, Collagenous Colitis, Psoriasis…. He hasn’t talked about other options for treatment. When the Budesonide treatment ends, either the watery diarrhea starts right away, or within 4 months. They told me they will have to find out the lowest amount of Budesonide that keeps me “safe”.

@1961deb That’s a huge weight loss! That is also why I keep at least 3 different sizes of clothes on hand so I usually have something to wear. I was warned away from taking the Budesonide because of the other autoimmune issues I have. Also, those warnings are on the pharmacy sheets that come with the drug. My pharmacist actually called me at home when my GI called the RX in because the warnings said: If you are female, do not take if you are over 60 (I was). Do not take if you have osteoporosis or osteoporosis (I do). Do not take if you have Thyroiditis, especially Hashimotos. Do not take if you have any other autoimmune disorders. Budesonide is a corticosteroid steroid and will eat away at your bones. That is the least destructive it can be. The half life of this steroid is longer than your full life. I had to have the entire right basal carpal joint (thumb) on my right hand rebuilt from just taking 2 doses of steroids. It had started eating away at the joints in my hand where I had begun to develop OA. I couldn’t resume my piano and now I cannot do anything with that hand. I really really hate giving advice, but I suggest getting another GI. Preferably a woman. I think it’s horrible what you are going through. Mine came out of remission 11/1 and is going full blast right now. How on earth do doctors expect us to make an office visit when we can’t get more that 2 feet away from the bathroom is beyond me.