I am looking for others diagnosed with microscopic colitis

I, too, have a diagnosis of microscopic colitis. Your post is informative and I will look into the Facebook group and this book.
I have found that cholestyramine first thing in the morning and one Imodium in the afternoon helps me. I agree on the fewer fruits and vegetables.

Diagnosed last fall with the same. Gastroenterologist put me on Budensonide x 3 per day and then titrate s l o w l y down when diarrhea subsides. I am still taking 1 Budensonide per day for maintenance. Hope this helps.

My newest gastroenterologist in CO suspects microscopic colitis and prescribed Cholestyramine as needed, i.e., when urgent diarrhea occurs. Unfortunately, scheduling of an upper endoscopy and a colonoscopy isn't until mid-November - when hopefully there will be confirmation of his suspicion or identification of some other diagnosis. [I have a long history of IBS with chronic diarrhea, polyps, SIBO, GERD, esophageal nodules, gastritis, hiatal hernia.] One thing that has helped me control diarrhea in the past was OTC activated charcoal (2 capsules) when Imodium, Pepto-Bismol, Kaopectate, etc. did not

I was diagnosed with MC last October. My GI doctor prescribed Budesonide. I have been weaned down to 1 every other day. So far, I have had no flare ups. But always uneasy that I will have one. Can anyone relate?

I found that taking any of the OTC solutions separately does not work. However, immodium and Kaopectate at the same time did work.

Foods that will aggravate it: raw vegetables, sometimes raw fruits, tough to digest food, like spicy food, alcoholic drinks, caffeine, carbonated drinks, fried foods, fatty foods OR sugar substitutes other than stevia. A lot of cereal (dry), unsweetened applesauce, crackers, LOTS of cooked/steamed or canned/jarred veggies (important to get many food colors), baked/mashed potatoes, oatmeal and other hot unsweetened cereals, etc. Slowly work in non or low-fat dairy, nuts and salads (I eat with carbs when I do have a salad). Also some people are really bothered by dairy products or chocolate.

Diet, lifestyle and other positive behaviors like sleep and exercise can change your life and your gut but you have to be vigilant! There is a thought that MC may be autoimmune related.

If you have an exacerbation, try the BRAT diet for a few days or more. Drink plenty of water and eat healthy!

Also, I have a fiber drink (Metamucil generic) with a lot of water so that it didn’t totally constipate me (yes it can happen)!

I only take Imodium (generic) very occasionally as I manage with diet!

I’ve been diagnosed by biopsy 2-1/2 yrs ago and had an exacerbation requiring budesonide once about a year after completing first treatment. I did have to extend taper per MD order as symptoms took a while to resolve. I do consider that a success but again, plan your foods!!

Talk to your MD and see what is best for you!

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.