Anybody diagnosed with microscopic colitis?

Posted by bobthebuilder54 @bobthebuilder54, Oct 12, 2011

Hi, wondering if anybody here has this for a dx. I have been having a flare for about two months, it is getting a little better with the meds but the doctor wants me to go on a short dose of steriods. I already have a muscle disease so hate to go the steriod route, (plus do not need to gain weight) lol. But if anyone has any hints for me I would appreciate it on how to control this. It is the longest flare I have had.
Susie

Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.

ndough | @ndough | Nov 12, 2025

In reply to @janstur "I wish we could have a group in person, but I'm all the way in Reno,..." + (show)

@janstur And that’d just one more problem with mc….when it’s out of remission (mine is), travel is going to another room in the house that does not contain a toilet.

rebe410 | @rebe410 | Nov 12, 2025

In reply to @ndough "@rebe410 The original stress for me was heat stress! Makes sense, it’s the biggest stressor on..." + (show)

@ndough
Wow I never thought of heat!
We live in AZ so it's definitely hot here!
Thank you I will watch next summer and see.

janstur | @janstur | Nov 13, 2025

In reply to @rebe410 "@ndough Wow I never thought of heat! We live in AZ so it's definitely hot here!..." + (show)

@rebe410
Why can't they figure this thing out?! I feel like you basically have to give up most of the pleasure in eating and still...
I'm always cold so heat is not a trigger. Of course, I haven't been off Budesonide since I was diagnosed and prescribed. I did every other day for awhile and now I'm trying every two days. I have yet another UTI today, going to urgent care. I wonder if that's related.

rebe410 | @rebe410 | Nov 13, 2025

In reply to @janstur "@rebe410 Why can't they figure this thing out?! I feel like you basically have to give..." + (show)

@janstur

If you are having issues then I would say a UTI is related.
They can't figure it out because they don't have the research money. Nobody wants to talk about these issues!
So you have never tried not taking Bedesnoide?
How much do you take daily?if you are going to try not taking it make sure to taper if you are taking more than 3 mil.
I agree being careful what you eat is boring!
Good luck at urgent care!
My sister gets something from CVS that makes you pee pink but says it helps with UTI's. Might ask the pharmacy after you get well.
B

piemonte | @piemonte | Nov 13, 2025

In reply to @janstur "@rebe410 Why can't they figure this thing out?! I feel like you basically have to give..." + (show)

@janstur Having a uti usually means taking antibiotics which can upset our gut micro biome.

I had a lot of uti’s before I was ever diagnosed with MC. I started taking a product called Uqora. I have had only 1 uti in the past few years so my experience with Uqora has been helpful.

I’ve also been taking Florastor probiotics. Some say probiotics make their MC worse.

ndough | @ndough | Nov 13, 2025

In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)

I’m pretty sure I will have a UTI by the time my current flare up goes back into remission. I don’t want to take antibiotics now because they’ll go right through me. A concern I have with other meds I have to take.

Probiotics give me diarrhea even when my MC is in remission.

ndough | @ndough | Nov 13, 2025

In reply to @kristimotch "I am looking for others diagnosed with microscopic colitis. I'm new to the group and the..." + (show)

Out of curiosity, how does anyone make it doable to go to doctors appointments, stores, etc. To just leave the house? When I’m in flare up, about 6 feet from the bathroom is max for me!

janstur | @janstur | Nov 13, 2025

In reply to @ndough "Out of curiosity, how does anyone make it doable to go to doctors appointments, stores, etc...." + (show)

@ndough
I take probiotics. Maybe I should stop. I take 3m Budesonide, just started every 2 days. Have a UTI today, am getting antibiotics unfortunately. Just had Moderna Covid vaccine on Monday after years of Pfizer. Wow! What side effects! I had uncontrollable chills, headache, aches, really sore at the site. Now a UTI - having fun! Nausea. Very discouraged.