MICROSCOPIC COLITIS SUPPORT

I was diagnosed with lymphocytic MC in January. I am taking 9 mg of Budesonide daily. I still can't get my life together. I am sick more than I am well. I have gone to a dietitian who told me to use Low FODMAP. I have tried but it is not working so well. I have not been in remission at all. My GI has tried me on Mesalamine which didn't work, choestrymine which didn't work. I am miserable. I am calling University of Michigan tomorrow to get a second opinion. Though I know the diagnosis is correct, I want someone else to give me some help. I am so sick of being sick!!! I have become: gluten-free, dairy-free, low sugar, eat no fresh fruit or fresh vegetables. What am I missing here? Please help.

Hi,

One thing to consider is the possibility that you might be reacting to the budesonide. You wouldn't be the first. Diarrhea is a labeled side effect. Budesonide is considered to be only about 65 % effective, according to published research.

About two-thirds of us are also sensitive to soy and chicken eggs. Many of us can't tolerate any commercially-processed products while we are reacting. And if you are eating anything that you don't prepare from scratch yourself, stop it. Research shows that most restaurant meals that are claimed to be gluten-free, are not. Soy is a biggie, because if you're sensitive to soy, you're probably also sensitive to most legumes, and that rules out a lot of products. If you are still unable to get into remission, avoid all grains, and all supplements, at least until you are in remission and your digestive system has healed for a week or so.

I hope this helps — it should.

Tex

Thank you. I realize that you are not a doctor, but your advice is worthy. I just noticed that the crackers I ate on Saturday contained organic onion and organic garlic. That may be problem, right? Also, what is your experience with people who have been on Imuran? The Budesonide is not doing it for me.

It might be a problem while you're still struggling to get into remission.

Imuran seems to work somewhat satisfactorily for most people, however it still requires a generally restricted diet in most cases. And if often takes a number of weeks or .months before it starts working One of the problems with Imuran is that I sure wouldn't want to find myself with a suppressed immune system now. Coronaviruses tend to romp and stomp when they find someone with a weak immune system.

Why not taper off the budesonide and rely on the diet (only). Soy is probably your problem if you're not already avoiding it. Have you tried the Pepto treatment? (8 tablets per day, for 8 weeks). 85 % of MC patients who try it reach remission within 2 weeks.

Tex

It seems that I take more Pepto and Lomotil. I truly don't think that Pepto is helpful. I take two Lomotil the first time I have a bowel movement, then take Pepto throughout the day, and Lomotil again before bed. I would need to take more that 8 Pepto per day. What happens if it doesn't work with 8?

If 8 per day doesn't work, then taking more isn't likely to help.

Tex

That is what I'm afraid of. Do you think I should try it for a day? If I have to take more than 8 per day, then I'm done with that.

If you're currently only taking 2 or 3 per day, then sure, give it a try. It's much safer than virtually all prescription medications. The biggest risk is that some people develop tinnitus, and some people are not able to clear the bismuth normally, so it builds up and can cause neurological issues, such as balance problems. For most people, those side effects will resolve when the treatment is stopped, if it's stopped soon enough.

Tex

Actually, most days I take 2 Lomotil in the morning and up to 6 Pepto during the day, and 2 Lomotil before bed.

In that case, I doubt that taking more Pepto would do much good, especially it you've been doing that for more than a few weeks.

Tex

I think you are right.