Lymphocytic Colitis: What is remission?

That’s not remission I’d say!
I have the collagenous variety of MC and took the very specific steroid Budesonide for about 2-3 months as I recall (starting with max dosage and stepping down ). Miracle drug for me after 7 mos of hell on earth such as you describe.

Have you had that steroid?

Hi @44tiredof19. Here are a few more discussions you may find interesting regarding Lymphocytic Colitis:

"Your tips on how to live with with Lymphocytic Colitis/Collagenous Colitis"
https://connect.mayoclinic.org/discussion/lymphocitic-cholitis/

"Lymphocytic colitis: Any diet-related causes or treatments?"
https://connect.mayoclinic.org/discussion/lymphocytic-colitis-4/

I'd also like to invite @tenpro, @parker63, and @marthurs to this discussion to share some of their similar experiences to yours.

@44tiredof19, when you say remission, is this something your provider said you were in, or are you wondering if it is possible to be in remission?

Have you tried taking Pepto Bismol (Bismuth subsalicylate) tablets? My GI Dr suggested it -- three 262 mg tablets three times daily) for eight weeks. For me, it starts helping much sooner than that.

Good suggestion. I also take Imodium

I wish I could offer some good advice. The budesodine as soon as I was done taking it I was back to water but have never had a normal BM. I have a combo of things. Lymphocytic colitis, lupus, I had a nissen fundoplication December of 22 and got cdiff from that and that is really where my issues began. Found the lupus and colitis issues after the surgery. I have also tried dietary changes with no success and I take all the meds they suggest.

How awful. I had 7 mos of ‘can’t leave the house’ diarrhea, two infections, one of which was C-Diff, multiple antibiotics and finally met my GI doc. I’m so sorry Budesonide didn’t work for you.

What do the docs say is next path?

They said I probably need to go to the Cleveland clinic. Life is definitely unmanageable. I work in community mental health and substance use. When I am in the community it’s really difficult. I don’t eat when I am at work but I also don’t sleep because I’m always in the bathroom at night. It’s a never ending cycle. Feeling defeated.

Is it feasible for you to go to Cleveland Clinic?

But I vividly remember the months where I couldn’t leave the house, and sometimes even that wasn’t enough. And if I had to leave I planned what and when I would eat - or not.

Do you have a support group
Of some Kind to help you keep your sanity?

Tell me about the Cleveland clinic?