Anybody diagnosed with microscopic colitis?

This website is focused on microscopic colitis. There's a great of info:
https://www.perskyfarms.com/phpBB/index.php
Hope this is helpful to you.

I was diagnosed with collagenous colitis 15 years ago. Daily imodium kept it under control until I contracted C-Diff three years ago that kept coming back until I had it for six months, then imodium did not work. I went through all of the suggested treatments, including budesonide, and nothing worked to stop my eight or nine bowel movements a day until I was put on Colestipol. I take one imodium and one Colestipol per day to control my symptoms and I watch my diet. I basically eat the Mayo Clinic recommended diet, gluten free, lactose free, lean protein, very low fiber, etc.. I take Cymbalta and that probably contributes to my intestinal problems, but I am unable to get off SSRI's because nothing else helps my depression. I'm glad someone brought this up because it is very rarely mentioned and there is not a lot of support available. Thank you!

@denisemarys
I was diagnosed with collagenous colitis 13 years ago. I was initially treated with methotrexate for a month. It worked- diarrhea stopped.
Since then I have had on and off episodes. 2915 I started immunosuppressive Imuran. Worked very well, but I got many serious infections and stopped after 7 months. I remained okay until a couple of years ago, when symptoms recurred, maybe not identical
, but now seriously affecting my quality of life.
Plan now is getting a referral from my internist to my local gastroenterologist about starting treatment again. Can’t wait!

I too was diagnosed with MC 2 years ago and have been frustrated with bloated stomach and diarrhea. The only thing that helps is keeping a food diary. I wrote down how I felt after each meal and was precise with naming the food or drink that I consumed. Pasta and fatty sweets are issues, as well as Asian foods and certain spices and seasonings. Restaurants can be a problem as they cross contaminate and use different oils that I never use at home. I tested negative for celiac disease. I researched and found out a lot of semolina flour pasta has the highest degree of gluten so I stopped eating it. I can eat regular bread ok as long as I don't eat too much. Bakery type sourdough bread is ok too. Bottom line, I must eat plainer foods and limit fats. I cook or steam veggies until they are soft which helps. Eating at home is best as I can control the preparation of the meal. I ALWAYS have issues with restaurants! Basically eating lean meat and cooked veggies works for me. Not too gourmet but I feel much better!

I’ve been on budesonide for six years with no remission. I’ve never tried their Pepto-Bismol tablets for eight weeks. I’m going to start today and let you know how that goes. I’m excited to see that something like that work for somebody.

Hello
I was just diagnosed with LC a month ago. I have had some success with imodium. I don’t want to knock my immune system down with budesonide. I have it and might need it once the 6 weeks of imodium is up. Pepto makes me anxious and the muscle jerks are weird.
I would love some advice about living a better life as far as traveling or doing anything really.
The thought of being too far from a restroom consumes me. My anxiety attacks seem worse. I am weak nauseous and fatigued. I do have some better days.
I wonder if remission is just a term that dangles out there, or if it worth hoping for.
I have been a patient at the Mayo in Scottsdale for 13 years. After my celiac and colitis diagnosis my care has been anything but stellar.
I am looking into options in SLC, no one here in the LV area even treat colitis.
My follow up appointment in AZ will be 4 months after diagnosis. I am just winging it trying to get any advice.
Hope you feel better soon!!

Thanks! there’s so much information and yet very little in the way of caring it. Another friend who has it and I are starting to eight week Pepto-Bismol trial. I stopped taking budesonide. I’m really hoping that this will work as it seems to have for others. I will definitely let you know. Hope you find some relief too. I will say it’s been 24 hours on it and I haven’t had any diarrhea for 24 hours. That’s hopeful!

Does the budesonide help heal anything…or does it just keep a patient more comfortable. I am nervous about starting on it. In particular how it dampens the immune system.
Did you have any lasting side effects?

I don’t think there’s any lasting issues with it. I didn’t really help me that much. Once in a while it seemed like I would get a little bit of remission but as soon as I started tapering it came running back. It’s supposed to help most people maybe I’m just the one off but I wouldn’t be too afraid of it. The steroid works in your intestines it’s not stomach. I did not have any side effects from it. Hope that helps!

I was diagnosed with microscopic colitis about 7 years ago through a biopsy. Nothing seemed to help the symptoms. I went to Mayo Clinic (Phoenix) and had another series of tests and was placed on Entyvio. The microscopic colitis actually had disappeared, as my colonoscopy biopsies were now negative but I do have Crohn's Disease (I have 2 markers for Crohn's) . I have been on the Entyvio for 3 years now and it does a really good job.