Anybody diagnosed with microscopic colitis?

Has anyone had a stem cell transplant to treat your ulcerative colitis? I’m considering it but would love to hear if it’s been helpful

Thank you Luann, It's such a struggle! I used to get extremely painful muscle knots in my trunk due to loss of liquids and electrolytes with all the diarrhea, but now I know to eat corn chips after a particularly sweaty hike and my cramps have disappeared, thank goodness.

I've tried cholestyramine and Entocort plus various combinations of Pepto Bismol and Immodium for my chronic diarrhea. The only thing that lessened the frequency of the runs was Entocort. It helped put some form into the watery stools I'd have sometimes seven times a day. But the side effects of that steroid were intolerable. I've eliminated veggies and fruits cuz they cause pain and bloating and increased runs. I mostly live on white stuff. My dog and I are both on the chicken, rice and cottage cheese diet. "-\ Watery stools never vary. I usually glug down P.B. in the morning and take two Immodium at night cuz it makes me sleepy and also causes my heart to go out of rhythm if I take more. Can't win!!

I do not know anything about Entocort.I will look into it. The only fruit I eat is bananas and s little pineapple. I love apple crisp but I have not had it in months. Ybanks for responding.

Tell me your symptoms. I have a friend that may suffer what you have.
Mikayla

A new microscopic colitis insight has been reported in the early days of a study of patients. Stress and gluten are the most reported aggravating factors for Microscopic Colitis. Let’s keep the ball rolling: Researchers are seeking more people to share their experiences so they can help MC sufferers better understand the disease. They are 560 contributors away from being able to officially report based on patient trends which treatments are reported to work better for different subgroups with common aspects. Together, we have the power to build the largest real-world knowledge-base for microscopic colitis. Take the survey and share the link to invite others to weigh in: https://stuff.health/s/FxpUB9XG

Also, there is a microscopic colitis patients group on Facebook that you might consider joining: https://www.facebook.com/groups/microscopiccolitis/

If we all share we can overcome the shortage of help for patients in a society that doesn't our illness and we can lift ourselves and others!

I was diagnosed with MC after having a colonoscopy last month. Since then I've now had an Endoscopy done as well. My GI doctor asked a lot of questions after the procedure (which I don't recall all because of coming off of anesthesia)...I answered no to several (those are the ones I can't remember), but the two I answered yes too were did I take any medicine daily like Advil, Motrin, etc. I had been taking Excedrin every day for a while until I decided to deal with headaches another natural way. He also asked if I was on any anti-depression medicine. I was on Sertraline back in early 2021 for about 6 months.

He said that could have caused the MC and that chances were good that it could heal itself. I am on Budesonide since the colonoscopy. I was supposed to have weaned off after 5 weeks use, but he wants to keep me on for a total of 3 months. I have not had any side effects (expect the diarrhea stopped, YAY)!

I am still waiting to hear from the Endoscopy biopsy if I have Celiac. Hopefully not, but I did have a blood test that showed elevated levels.

In January 2020 I started having horrible diarrhea, urgency, etc. Underwent colonoscopy 3/2020 and diagnosed with lymphocytic colitis. Probably because of the pandemic or whatever, GI never really followed up with me etc. I seemed to go into remission and have been fine but for the past two weeks I am back to awful diarrhea, belly cramps. I also have Hashimoto's. I am thinking about starting a low Fodmap diet and cutting out gluten, etc. Thoughts on this? And is the Wayne Persky book worth it? Thanks everyone.

You might try an elimination diet. I did this with the help of a Functional Medicine doctor. First I got off sugar, then dairy, then grains and legumes and got onto a Paleo diet. The diet consists of meat and vegetables, also non grain carbs such as sweet potatoes and cassava. This diet did not eliminate diarrhea, but it helps everything else. This IS a way of seeing if any foods aggravate any health problems. Like you, my diarrhea, which went on for over a year, resolved itself before I saw a GI doctor, but now I know that there is such a thing as microscopic colitis and that there are medicines for that. He told me the kinds of medicines, but I did not write them down since the problem had resolved. I would go see your GI doctor again. Or just give a call.

After 5 years of diarrhea, I finally found a doctor that diagnosed MC. I am on my second month of Budesonide. I will be weaning starting on Saturday. So far the diarrhea has stopped. I’m anxious about weaning for fear the diarrhea will start again. I have quit gluten, dairy, onions and garlic, and only eat fully cooked vegetables with no skin. Don’t want to continue this diet There are many GIs that don’t listen and don’t know how to diagnose. I’ve been tested a lot but this was the only doc that had a clue. I’m in Houston and my doc is with Methodist hospital. I’ll update after weaning.

Buy Persky's newest book, "The Microcolitis Diet" and visit https://www.microscopiccolitisfoundation.org/mc-forum.html, where other MC patients are sharing what works for them. This is a gut disease that is different for everyone; reading about the experiences of others will help you define what may work best for you as you try to get a grip on it. FYI: Low FODMAP does NOT work for many of us. After a horrific three months on it during which I only got worse my GP recommended that I just eat meat and potatoes, no fruit or veg. I thought he was off his rocker but I did it and I felt better quickly. It wasn't perfect but it helped cut back the 10-15 times a day of spontaneous mess. Fuller healing since has come from using "The Microscopic Colitis Diet" book by Wayne Persky along with a course of Budesonide and Cholestyramine. Meat and potatoes are my meat and potatoes now. I would never recommend low FODMAP. Some MC people can handle it. Many cannot. Newbies should not be told it works. Because it sometimes or maybe even often doesn't. It takes a lot of effort to find your own best personal path. It takes trial and error to know what works for you. Also, what works for you will keep changing all the time, and that can be quite frustrating. You just have to roll with it. Join the Facebook group as well - the people there are fabulous! https://www.facebook.com/groups/microscopiccolitis/