I am looking for others diagnosed with microscopic colitis

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/

@ymoreno2
Don’t worry about weaning- just follow instructions.
I had collagenous colitis which is very similar. After my initial treatment the diarrhea did not return. I was told that it could possibly return in the future, but then I could just start the meds instead of waiting forever.
Did you find out what set it off?
Talk to your doctor about reintroducing certain foods.

Thank you. That is very encouraging. Not sure what caused it. I’ve always thought I was lactose intolerant than sugars and over a few years there was little I could eat. Thanks for your response. I appreciate it.

I had mild constipation all my life, combined with wild diarhhea for a day every few weeks. When I was young the doc told my folks I had 'an emotional tummy'. I suppose that was 1960 for IBS-M. No real problems till a year ago. I had a terribly stressful year on top of many oral surgeries including bone and gum grafts which had me on steroids 3 different times. I also lost 50 lbs in the past couple years (on purpose). I got suddenly ill Christmas Eve with terrible bloating and constipation which somehow turned around and became months of vicious diarhea, lack of appetite, and abdominal pain. Without going through a laundry list of efforts to fix this, they put me on welchol and within days all my symptoms resolved. The welchol constipates me so I have to take miralax nightly but thats a simple fix. During the testing for my symptoms I had endoscopy and colonoscopy (my 3rd in 10 years. All my other colonoscopies were normal but this one diagnosed collaginous collitis and a tortuous colon- to the degree they said they had to use external pressure to advance the scope and advised against future colonoscopies. Weird that I would develope that but I suspect weight loss may have something to do with it. I guess I have reached a balance but it is tenuous, my gut can tip either way if I slip up. Good luck to all sufferers, my GE said collagenous collitis is not likely to get much research because it is more a problem for older women and gets ignored.

Has anyone ever tried "Gut Restore" or Enzymes for their IBSD or colitis? If so, has it worked for you?