Is anyone dealing with lymphocytic colitis?

Posted by boy4 @boy4, Apr 2, 2024

I have been dealing with this for over a year taking budesomide off and on,has anyone gotten help with this condition?

Interested in more discussions like this? Go to the Digestive Health Support Group.

@joanthompson

I was diagnosed in Dec. 2024. I thought I had the flu, it was really bad. I got my bowels under control by having liquids only then slowly introduced some foods back and things got better and fairly normal, but my PCP said I should have a Colonoscopy anyway and glad I did bc that was when the MC was discovered, I am on Budenesodine as a taper medication. I will be on it for 4 months. I have an 3 autoimmune conditions that my doctor feels is the cause, but I guess we will never know really what caused it. I take omeprazole for GERD currently. My Gastro. Said that couldn’t cause the condition because I haven’t been on it very long and I only take 20mg daily. I am doing well and find Dairy to be a trigger but only certain dairy products. I see my Gastro, for follow up at the end of June. Not sure if I have to be on this all the time or if once your done do you stop altogether and see or is this drug forever?

Jump to this post

I was diagnosed 2 years with a biopsy during my colonoscopy,I’ve had 3 rounds of Budesimide,I’m now on the third round of one a day.when I go off of it ,I don’t do very good,go,see my GI doc in 2 weeks,to see if there’s any new treatment,I sure have to avoid a lot of things,coleslaw,high fiber foods,etc.if anyone has any good advice ,pass it along.Mine all started after two rounds of ATBs when I had tooth surgery.

REPLY
@joanthompson

And Stevia Leaf extract, which is actually a low FODMAP,

Jump to this post

What is the deal about Stevia leaf extract?

REPLY
@pb50

I have the sister version of microscopic colitis - collagenous colitis -

When you say you take Budesonide on and off, how long was your first course of it? Mine was 3 months, stepping down from 9mg a day to none.

Jump to this post

Each course was 3 months.

REPLY

I should follow up to say that like many collagenous colitis patients who successfully completed a course of budesonide from 9mg to none, i have relapsed a second time. So I am now on permanent maintenance of 3mg/day. The thinking has evolved as they observed the relapse rate. I’m doing ok. Not happy to be on a maintenance drug not of my choosing. But que sera.

REPLY
@boy4

What is the deal about Stevia leaf extract?

Jump to this post

It’s a plant and the leaf is crushed and used as a sweetener. Many other sweeteners are artificially made ie aspartame, Splenda & Sacharrin, Mannitol, Erythritol, Xyilitol, These are known to cause certain cancers. Stevia has been considered safe if used moderately not habitually.

REPLY
@boy4

I was diagnosed 2 years with a biopsy during my colonoscopy,I’ve had 3 rounds of Budesimide,I’m now on the third round of one a day.when I go off of it ,I don’t do very good,go,see my GI doc in 2 weeks,to see if there’s any new treatment,I sure have to avoid a lot of things,coleslaw,high fiber foods,etc.if anyone has any good advice ,pass it along.Mine all started after two rounds of ATBs when I had tooth surgery.

Jump to this post

What is ATB and could have been a coincidence that it happened after your tooth surgery, what would make you say that?

REPLY
Please sign in or register to post a reply.