Book by wayne persky is great. Mycroscopic colitis. It is crazy all the issues caused by this colitis. Also budesonide was a life saver for me. For 4 years I felt ill as if I had a virus that would not go away. Took several weeks for diarrhea to improve but the stuff is terrific for me. Even helps with arthritis pain in back and knee. Be sure and taper off slowly and I have to go back on it but I have several digestive issues. I also take apriso for inflamation in gut. The book answers so many questions my pa is recommending it to patients. Hope this helps

I have collagenous colitis which is similar to what you have. I’ve been given all the medications and nothing brought the diarrhea under control. I am now on infusion therapy and my symptoms have greatly improved.

I have a very long history of symptoms like colitis. I had a colonoscopy six months ago and biopsies revealed collagenous colitis. I was prescribed budesonide for three months--reducing the amount every month until finished. It made a huge difference in my ?diarrhea-type episodes, consistency of BM's... I was thrilled. It has been about 2 1/2 months since I finished the budesonide. I still have the occasional "flares" which depend on what I eat but overall the urgency is much less. Changing doctors is what has helped the most.

Does this look like it would be ok as a veggie substitute for me with
Gastroparesis!

The infusion therapy I receive is actually for Krones (sp) Disease and IBS but none of the medications I took could take care of my symptoms. It's Entyvio. It has relieved my diarrhea but still cramping, crippling fatigue, no appetite and continued weight loss. I had to wait for approval from Medicare before I could receive, the infusions cost $42,000 a year, too rich for my blood to pay. I get my 4th infusion tomorrow. Keep me posted as to how you are doing.

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!

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!

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!

I hope the Entyvio helps you! It is a monoclonal antibody and targets inflammation areas. I was surprised that my collagenous collitis had disappeared because I thought I had it for keeps. Crohn's Disease is elusive at times. Symptoms can come and go. I also had a duodenal stricture which I understood was permanent. That is no longer there either. I know these weren't misdiagnosed because the doc did an endoscopy (EGD) and actually stretched the stricture during several endoscopies. The colon was biopsied. I'm glad I finallywent to Mayo Clinic, which was where I was diagnosed with Crohn's. The doctors before Mayo told me that I would have to have the duodenum and part of my stomach removed because of the stricture! That sent me running to Mayo! I still have my stomach, intestines, getting Entyvio, and am doing very well! (4 years now.)
I wish you the best with your treatment!