Anybody diagnosed with microscopic colitis?

@volleyballfan

I have microscopic colitis - when I was diagnosed about 7-8 years ago, I was started on 3 tabs budesonide in the morning. I am now taking one each morning. I've also been on the special diet and take Metamucil in the morning. I usually have one bowel movement in the morning. You DO NOT have to suffer.
FIND ANOTHER GASTROENTEROLOGIST WHO KNOWS HOW TO TREAT MICROSCOPIC COLITIS!.

Thank you. What’s kind of diet are you on?

@gengwen Are you referring to when you are in remission?

I would not say I'm in remission as I take medication and use the formal diet to control the symptoms - loose, frequent stools. I generally have one (or two small) stools each morning.

If it were me, that would be a sign of being in remission.

@ndough
I agree - 2 stools per day is great for people with MC! What kind of diet are you on? I take colestipol (tablet substitute for cholestyramine) twice a day, take fiber supplement three times a day and avoid caffeine, dairy and raw vegetables. My stools have bulked up and mostly in the morning. Still some urgency. This is so helpful to hear from other people who suffer with MC! TY!

I have had chronic diarrhea and fecal inconvenience for about 2.5 years, since weaning off Budesonide after 15 years. I am serious, most days of the week was hugging the toilet the past 2.5 years! I changed GI's a few months ago. He told me if I dont want to get back on Budesonide and I have the interstem implant (that doesn't work for me either) he couldn't think of anything else. His advice was to take up to 6 Imodium tablets as needed 30 minutes before a meal and take Citricel. He then handed me a box of tissues. I am sure you can guess why. Miraculously, I think it just might be working!

Budesonside has many side effects. The last straw was when my bone density test results came back. My GI didn't wean me off long enough. What took 1.5 months, shiukd have taken 6 months afterc15 years and I went into adrenal crisis and almost died. I could barely make it to my cell phone to call 911 for the first in my life. I kept collapsing every 2 ft, crawling on the floor to my cell phone. I had had diarrhea and vomiting for a solid 3 hours and my body started shaking uncontrollably. I have never been that weak in my entire life! I was actually dressed to go skiing that morning! Told my husband to go skiing without me, that I must have a stomach bug. Had no idea it was because I had depleted all the cortisol from my body. Your adrenal glands stop making it when Budesonide takes it over. When I stopped the Budesonide, I then had NO cortisol and my body went into crisis mode. I had no idea that Budesonide suppresses your natural source of cortisol from those important 2 tiny glands that sit on your kidneys!

@mtrachel My diet varies. If my MC goes back into remission, then I can begin adding fiber to it. I mainly start adding a lot of fresh vegetables and fruits, but still stay away from beans, broccoli, and a few others that even bother people without MC. I also eat whole grains more. I’ve never had to use fiber supplements as that will usually make my MC flare up again. I can drink one-two cups of coffee in the morning, but completely avoid dairy. When my MC is flared up, What works best for me is to start off with lots of liquid at first (Pedialyte or Gatorlyte), water, so I don’t become dehydrated. Jello is about the only food I can keep in me. I slowly add others foods I can tolerate, but only add one at a time. Green bananas are great. Toast (gluten free bread if possible - never use whole grain or wheat), Cinnamon graham crackers (for some reason cinnamon really helps), rice, plain at first then try adding chunks of chicken to it. If your MC is in flare up mode, the main thing to remember is to stay on carbs and avoid fiber (no fruit or veggies).

@donnagail I think I will try your Immodium and Citricel (or Metamucil) trick! Probably what is helping is the Psyllium husk. I’ve read other articles about it helping not just constipation but diarrhea too. I’ve had MC for more than 35 years. There is absolutely no way I will take Budesonide - in X-rays my bones look like lace. You can see through them. When I was younger (teens, 20’s) I was a dancer & any injury you suffer, the company doc just injects it with a steroid. I had that done so many times that my first bone density test (at 50) looked like a test of someone at 80. While Budesonide is a much milder steroid, nope. The half life of steroids is more than your lifespan.

@ndough Yes, aside from Citricell, Metamucel, phyllism husky all do the same thing.

There is so little research being done for MC because they dont think enough people have it or the pharmaceutical company that makes Budesonide is making a killing. In the past 8 months, chronic diarrhea caused 3 UTI'S in which taking a broad spectrum antibiotic caused C-Diff for 2 months. My system has been so compromised, a month ago I was dealing with E-Coli and Noravirus. No clue how I contracted either. I went to AI and said I wanted to go extreme to starve off the bad bacteria that has taken over my gut, and I probably have SIBO in my small intestines. AI suggested the Elemental Diet, a very challenging liquid diet for 2 weeks or 3 weeks if I do have SIBO. I bought a couple powder samples that just came in. I plan to drink one today and tomorrow to see if I can get them down. AI has TONS of information on how to do it. I am trying to find a telehealth registered dietician to guide me through it. I have to do something to get my microbiome balanced. It is going to be HARD! Pro and prebiotics as well as the paleo diet werent doing it. I do think the pale diet will be best once I have good bacteria taking my gut back. I did my own testing for gluten intolerance and casin and I have a high intolerance for both which is the case with most MC patients.

Please let me know how you are doing.