I am looking for others diagnosed with microscopic colitis

I’m not sure. I will see my GI PA in December. She may discuss alternatives.

@ndough Thank you for sharing this information. I have been told that my CC was caused by the MS drug I was taking. And it seems like each autoimmune problem is contradictory to the others. It’s so frustrating. They tried me on a different drug, and that made me instantly worse. Budesonide keeps it under control while I’m on it. One more month for taking 6 mg and then we drop to 3 for 3 months. I pray at that time, it will be in remission. But so far remission is 4 months max. So far I have osteopenia which I have had for years. I had to give up piano because my spine hurt too bad to sit up straight and play. That was disappointing, I understand how you must miss playing. I also have several clothing sizes so I have something to fit. Have you found something that is not corticosteroids?

I miss playing every single day. It’s hard. There is really no telling what causes microscopic, or cc, to come out of remission, according to my GI. A reaction to medication. An infection (even a sinus infection - which I get constantly), allergies, stress. It’s considered an autoimmune disorder so anyone’s guess. I couldn’t, and won’t, take Budesonide, however, what really helped me was pink bismuth (Pepto Bismol), but far more than what is says on the package of tablets. It’s something to talk to your gastrointestinal about. Unfortunately I can’t take it anymore. A year ago I had a heart attack while I was in surgery (best place to have one, I guess). The surgeons were surprised my PCP was surprise I was surprised. Not a candidate at all for heart problems, but yet. So I’m on blood thinners and pink bismuth has a lot of salicylic acid in it (stuff in aspirin) so nope. If you’re not on blood thinners, talk to your doctor about pink bismuth. I think my doc had me chew 4 tablets 3xday (after each meal). It honestly helped!

@piemonte You’re not sure…? If you have Microscopic colitis? What kind you have? If it could be something else? What do you mean by alternatives? Excuse me, but why is she waiting until December???

Well, the first thing you should do is read the warnings listed very carefully. Ask your pharmacist for the pharmacy sheet and go over it with your pharmacist. They know far more about the side effects of drugs than doctors do. If this is your regular pharmacist, he or she will have your records about any other medications and conditions you have. Ask them for their honest opinion. Then discuss it with your doctor. Corticosteroids are hard on your body, very hard on your bones and may do you more harm than good. I majored in dance, minored in music (piano) so dancing took first place. I was started on steroids at a young age. When you are dancing and you hurt yourself, as long as it’s not broken, they give you a cortisone shot so you can keep dancing. It builds up. I’m 72 now and have broken so many bone my orthopedic surgeon feels like a member of my family.

As long as you aren’t on blood thinners, a good is alternative is pink bismuth (the tablets). But you have to take a lot per day. AND, please check with your doctor! It may not make it stop completely, but it helped me enormously - until I was put on blood thinners. I can no longer take them.

I have MC it started after my gallbladder was removed by emergency. I also have Ostepenia and Osteoporosis in spots and nobody has mentioned Budnesoide is bad for me!
I had been in remission for 3 years but unfortunately it returns!
I also am looking for another med to take for it but research is limited. Watch your fat intake that does help somewhat.
Just know you aren't alone and we are all here for each other!

@rebe410 That's so interesting because mine started after my hysterectomy.

@ndough
I looked back at my post. I do have MC. What I was responding to was what alternatives to budesonide my GI doctor might recommend.

After coming off budesonide in mid October my symptoms reoccurred. My GI doctor said I could take 3mg of budesonide daily until I see him again in early December.

Because I was getting constipated on the daily dosage, I’ve got back to 4 times a week. My symptoms are under control. I’m going to try to taper to 3 times per week. Time will tell.

@janstur there must be an alternative, less harsh…I sympathize because I, too want to keep playing piano as long as I can…I had CRC and some of the meds for it wreck hands…fortunately, some genetic testing got me to immunotherapy, no hand problems…hang in there, keep asking…best of luck-and more music !

@rebe410 Oh yes, I know all about fat intake! Even though I’ve had MC for over 35 years, it changed a lot after I had my gallbladder removed several years ago. I’ve always been really good about what I eat anyway, but wow…the slightest bit of fat. Holy cow.