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How to manage microscopic (lymphocytic) colitis?
Inflammatory Bowel Disease (IBD) | Last Active: Dec 7 3:05pm | Replies (39)Comment receiving replies
Hello. I have also been diagnosed, by biopsy, with lymphocytic colitis. This was many years ago and I am now being "treated" by a newer doctor. The last colonoscopy was incomplete because he could not move scope past multiple diverticula.
I have had terrible pain since Spring of this year and have been tested for UTIs, kidney tumors, I had a trans-vaginal ultrasound, an MRI and CT - all unremarkable except for extensive diverticulosis. I have been treated in the past with Budesonide - a 3-month course, starting with 3 (3mg) pills per day, tapering to 1 pill per day in 3rd month. This worked, but was tedious and does have its own side effects. I have had the watery diarrhea since March. The failed colonoscopy was in August. I do not know why the gastroenterologist has not prescribed anything to help me. I went to the ER a week ago in awful pain, but was told that it was likely the LC and to see my Dr.
I had multiple UTIs in the spring because of the lymphocytic colitis and the bacteria. There must be an injection or infusion that can put this in remission. I have heard of others who just took one 3 mg Budesonide daily - indefinitely. My doctor has not offered any answers other than to try a half of an Immodium before meals, which in my case, often leads to constipation and more pain! Apparently, being "normal" again is out of my reach. I must always be near a bathroom, so, no long walks or scuba diving, etc. I am amazed that I do not lose a ton of weight because I don't seem to fully digest anything I eat.
Has ANYONE found any answers for this awful disease?
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@reggiemc I definitely feel for you and what is happening. I was having some of this same thing - although my diverticulitis wasn't this massive. I did have an abscess in the diverticula- and after 2 years of messing with this - feeling nauseous all the time, I found 2 Dr.s- one in Madison WI that said that diverticulitis has to come out - there is fluid around it, another abscess was forming, and a fistula was growing off of it, leaching bacteria into my system - probably causing the nausea and off and on diarrhea! After 4 trys (I kept getting to sick for surgery) I finally had the diverticulitis removed on Oct. 17th. It went so well, that I went home in three days - and in 2 weeks I started the budesonide again (had to be off for the surgery) and so far I have not had another issue with the colitis. I think I will be on Budesonide for life. I've been taking it for about two years already. I do go down to two pills if things are going well. I might try just one pill after Christmas. If I do have an episode I take one Dipheniatrop. It stops the diarrhea sometimes for a 8 hours, sometimes 24 hours.. I can eat some meals, get a good mights sleep. It can be taken 4 times in 24 hours, but I've never had to do that, I also increase the budesonide back to 3 - and usually the colitis stays settled for a while then. I have also had more luck with the budesonide when I take it spread out over a day, instead of all three at one time. I've been playing around with what works for me for about 4-5 years now. Hang in there - keep trying things - and talking to others, like on here for other answers. I also fired one surgeon, because he didn't want to do the surgery for the diverticulitis yet, when I had 2 others saying it had to come out right away. I fired him when he came to talk to me in the hospital - saying, well, we'll see how everything goes once you are discharged and then make a plan etc. etc. I said- the plan is made- you are not my surgeon, and it's coming out as soon as my new surgeon says it's okay.