How to manage microscopic (lymphocytic) colitis?

@margaretamelia - welcome to Mayo Clinic Connect. Another discussion you may be interested to read and where you might also pose your question is here, in the Mayo Clinic Connect Chronic Pain support group:

- Celebrex https://connect.mayoclinic.org/discussion/celebrex-1/

What did your doctor say about the connection between celecoxib (Celebrex) and the microscopic colitis? What did he or she say about when you might expect to improve now that you are off the medication?

@lisalucier Doctor said stop taking Celebrex it can cause high blood pressure and microscopic colitis. I am now seeing gastroenterologist and have sent stool for analysis I am 92 and I miss taking my celebrex for bone on bone in my right knee.

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?

@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.

@lpockat may I ask your age? I’m 70 on Budesonide and wondering if I’ll take it for life. I know there are side effects but have to see if the good out weighs the bad.

@annpeters I will be 72 in March. I was diagnosed with coliti 4 years ago, and started using budesonide then. I have good luck with it, and usually only take 2 a day. I also discovered that if I take the 3 or the 2 pills during a 12 hour period, instead of all at once, I have better results. Taking this really helps my back and knees. I'v had a major back surgery in 2017 - I had good results for about 4 years, and then started with a worse pain in my pelvic area. I tried injections, PT, and then someone recommended meeting with a Dr. that does a medtronic device with a battery pack, and that has really made a great difference as well. The budesonide helps with the arthritis that has settled in my back since that major surgery. I also have a 20 degree S curve at the bottom of the spine. I also have bone one bone in my knees, but wouldn't be able to do the PT if I had surgery on my knees, and could end up with more pain. Again, the Budesonide really helps my knee pain - almost have none! The only problem I have with side effects is it keeps me awake and makes me a bit jittery. This is one reason I try and stick to 2 and would like to get down to 1 . I can handle getting poor sleep if the pain is under control. Good luck to you - and I hope you can stop taking it, which means your symptoms are under control 🙂

@annpeters I should have also said that since the diverticulitis was removed, my colitis has been a lot better - so maybe the diverticulitis was actually giving me more grief than the colitis. I do have trouble with a car sick feeling, and the Budesonide really helps with this.

Thank you for the information! I eat up new information like it’s candy. May I ask what you have the Medtronic device for? I wonder if it’s similar to a procedure I’m trying to have called the Sacral nerve stimulation…? I live in Canada and there’s only one doctor in Ontario, the province I live in, that does the procedure so if he’s even still in practice (waiting to hear his response to a referral) I’m sure it’ll be a lengthy wait. ). But it provides hope and hope is so important! The sacral nerve stimulation helps with both bladder and urine control.

@annpeters The stimulator I have is for my back pain. I'm kind of happy to hear that there is one for the bladder and urine control. I'm imagining that will be my next area of concern 🙂 Between this device, the battery, the spacers between my vertebra and the cage around my spine, there's not much room left in there. I, also appreciate any new information. I think our sharing of issues, what works and what doesn't, is more helpful than the info. we get from doctors. After a couple years, we patients, know our bodies and what works and what doesn't. Doctors should appreciate this - give's them something to share with others- especially when they haven't had to deal with this personally. Good luck to you and your upcoming procedure! Stay in touch!

@lpockat oh man,! I just reread my initial response and it should’ve read that the sacral nerve stimulation helps with both bladder and BOWEL control. I totally agree that we are fortunate to have the ability to share information amongst us who are first hand dealing with… I have to remain hopeful that my doctors will be receptive to my situation. … A different story for a different day. Trying to remain hopeful and positive.❣️.