Anybody diagnosed with microscopic colitis?

Hello, I was diagnosed with MC July 5. Problems for years, finally some kind of diagnosis. I am being referred to Stanford to hopefully figure out the cause. So far blood tests don’t reveal any autoimmune disorders, rare diseases. I’m 61, female, active all my life. I’ve been unable to gain back any weight, even on the steroid. I am trying to taper the Budesonide, but have episodes if I do. I also have Bronchiectasis & NTM infection in my sinuses and lungs. Hypothyroid, DDS, and TERRIBLE muscle/tendon stiffness & pain - especially in my hamstrings. ?? Looking for answers.

"Uneasy" is definitely the operative word that I relate to and always with an eye out for how far the nearest bathroom is, how far I'm traveling (we live in the Rocky Mtns), how quickly can I navigate, etc. etc.

I can relate. I was diagnosed in March of 22. Here is my abbreviated story. I also took Budesonide. We did the standard 8 weeks and then tapered. I relapsed immediately. I went back on the full dosage and then tried again with no luck. The third time I tapered to every other day like you and have been fine. The problem is I don't like being dependent on the drug so I am actively searching for the root cause. Given most doctors assume MC is an autoimmune disease, and given that the dozen or so books I've read on the subject attribute autoimmunity to the SAD and stress, I went vegan and did counseling. I also did hypnosis and EMDR. My forth attempt to taper to every two days recently failed. I'm now working with a functional doctor. I recommend that you do a full blood workup, a gut health stool test, and a food sensitivity test. None of these tests is perfect but they can all provide clues. My food sensitivity test showed sensitivity to gluten and oats so I have eliminated both. My blood work showed low B and D so I've fixed that with supplements. It also showed high homocystein. My gut health test showed I have dysbiosis and high secretory Iga. I'm hoping the gluten is the cause of the latter. You also need to make sure your CRP is normal. Until my secretory IGa is normal, my dysbiosis is cured, my B and D are up, and my homoscystein is down, I won't try to taper again.

I know many doctors believe fiber is not good for our disease. However, since most autoimmune experts think a whole food, plant based diet is the best for autoimmunity, I haven't yet given up on the vegan diet. One of the biggest challenges is trying to figure out what hurts and helps while the Budesonide is working and you are symptom free. Hope this helps.

I was diagnosed in 2002 and was on Asacol til 2019. I have now been diagnosed for over a year with gastroparesis. I struggle with what to eat even though I do keep a food log.

I was diagnosed in April ( mild but OMG where is the nearest bathroom?) I used a half Imodium every 2-3 days which held me to “ normal” without a diet change. I really wanted was the cause of this out of blue onset. I reviewed ALL supplements with Doc and turns out I was taking Lipo Flavenoids for tinnitus ( which helped that) years ago and when I felt a new twinge of recurring tinnitus I began again. Turns out it’s a trigger for MC. Totally coincided with that restart of lipo flavenoid. I stopped and all MC symptoms abated by 7-10 days. Been a few months now. Ear not too bad either.

Check your supplements! If flavenoid is in your routine see if eliminating it will help.

Good luck

You sound like me … I have everything you have plus … 1000’s deep wet belching and constant churning gut . I’ve tried everything in 10 years. I mean everything!!! Many diagnoses, plus it affects my heart ♥️ palps . I can’t eat anything ( and I eat so clean and healthy) w/o suffering every day and night .
I’ll see my 6 th Gastro Dr in Oct . Praying 🙏 some how we can ease my suffering.
I’m sorry for any of us that have to go thru life like this . Takes all Joy out ….

What misery! So sorry you are going through all of these awful conditions.

I can relate to traveling, but so far this year I have been to France, Tucson and Las Vegas - but still on Budesonide every two days - with no problems. But I always know where the bathrooms are. Cathyas

Thanks, this is helpful.

I am fairly new to this group also, but it has helped me knowing others are experiencing basically the same diagnosis. I am able so far to eat most foods, but I am still on Budesonide. I will be having a sigmoidoscopy next month and am hoping for some good news. I hope this group can help you and that you are able to handle this disease well.