Your tips on how to live with Lymphocytic Colitis/Collagenous Colitis

I have a number of autoimmune diseases. It is irksome having to control ones diet, stress, exercise, and everything else. Hopefully my Budesonide keeps working after I am done dosing. My food log of what I can't eat keeps getting larger.

@itsmeagain
My gi has prescribed 3mg Budesinide every 48 hrs which has helped some with my collageounes colitis. However we are now going to increase the dosage.
But yes, colitis is one of the worst ailments I can think of.
Good luck to all of us.

We all have unique bodies so we have unique solutions. I was on high doses of Imodium at first in ‘22, then Budesonide, the finally Colestipol or Colestyramine. The bile acid meds have been the only thing that kept me in the game of life. I was better the next morning after my first colestipol dose. I was diagnosed with celiac sprue in ‘13 so already being on a GZ diet was helpful, also being on a good probiotic and prebiotic regiment.
I eat everything now (except wheat barley rye and oats). I also am back on statins. I have remission for short periods of time but not long term yet.
My life is pretty much back to normal.
It can be miserable until you get it all figured out but LC and Celiac is something that can be managed.
No one understands around me but I am very thankful that they don’t need to be.

I was recently diagnosed with lymphocytic colitis after months of diarrhea, discomfort and weight loss. I am immunocompromised with ypogammaglobulinemia “Specific Antibody Deficiency” , recurrent Esophageal Candidiasis, as well as a host of other medical challenges.
I was recently put on Budesonide / Entocort and am having a bad reaction to it. Initially, it caused much worse diarrhea with a weight loss of 7 lbs over 3 weeks. My blood pressure and pulse spiked - my cardiologist has had to quadruple my losartan to try to keep it down. In addition, I now have a yeast infection.
I'd really like to better understand what other possible treatments and life style changes there are for lymphocytic colitis.

Thanks.

I have been diagnosed with collagenous colitis for over a decade. Among other GI concerns I have, this one seems to cause the most reoccurring problems. With the help of Mayo dietician's, I have had help with the FODMAP diet, I am slowly reintegrating some FODMAP triggers. Fiber really sets the colitis off, but am able to tolerate small amounts now. I am not lactose intolerant tolerant but have a glucose malabsorption. For years a GI doc elsewhere didn’t check the breath tests, so I just assumed I had a problem with lactose and all along it was mainly fructose. That’s where the fodmap diet and the Monash app has helped. I can have aged cheese and small amounts of good probiotic dairy like kefir or Greek yogurt, but avoid milk and soft cheeses.
Spoonful is an app that can scan groceries and help as well. A referral from Mayo GI to a pelvic floor physical therapist who did visceral therapy was really helpful. She also recognized early on that my gallbladder didn’t seem to empty well and she was right! Scans soon revealed I needed my gallbladder removed. Her suggestion of effleurage during painful bouts and using a tens unit has been wonderful. I used to need a heating pad constantly, not so much anymore.
I too had reactions to budesonide and it seemed to make things worse. My GI doc had me do a 6 week Pepto trial. That seems to help and I also understand that multiple daily doses of loperamide can help. ( I can’t take a lot of that either).
I am using Fodzyme enzymes ( expensive, but a life saver) for dining out or those foods I’d like to have once in awhile). Stress causes flares.
I have accepted the fact that sometimes there is no rhyme nor reason as to what caused a flare and that it may be some of my other GI maladies. Treatment has seemed like hit and miss. But with the knowledge about food, what meds don’t work etc, I seem to be on a decent maintenance phase with less pain. Hope this helps. Good luck!

I am also on Budesonide and am worried about side effects can you tell me about your experience on it thank you

I've been on Budesonide non-stop since I was diagnosed with Collagenous Colitis in October, 2023. I have had no discernable side effects and have so far managed to taper down to 3 mg a day. I have a follow-up with my GI in March and will likely try to get down to 3 mg every other day. The side effect I was most concerned about was loss of bone density since I already have Osteopenia. I've been taking supplemental calcium (1500 mg daily) and actually saw my bone density improve on my April, 2024 Dexa scan. Keep in mind that we are all different and react to meds in very different ways. Best bet is to discuss your concerns with your GI doc and monitor for side effects.

I was diagnosed with lymphacytic colitis over two years ago,have had four rounds of Budesimide,3 months each,with 9mg,6 mg,and 3 mg.i started having side effects ,weakness, thinning skin and petechaie on my arms,I have been off of it for a month,taking Colesevelam 625 mg,2 twice a day which is doing nothing for my diarrhea,my GI doc ordered Xifaxan which the insurance did not approve. My Dr said I was on the lowest dosage of Budesimide,he has never ordered any bloodwork,I am having a cat scan next Wednesday.Any advice or new ideas out there?

Hi, @boy4. I wanted to let you know I moved your post here so you could return to this discussion you started before and talk with members such as @joanthompson @pb50 and others:

- Is anyone dealing with lymphocytic colitis? https://connect.mayoclinic.org/discussion/is-anyone-dealing-with-lymphocytic-colitis/?pg=3

It sounded like you thought that bloodwork might be useful. Wondering if you have already or will be asking your doctor about doing bloodwork? Will you be taking another antidiarrheal over the counter or taking to your doctor about prescribing something else for this issue? If so, what will you be taking next?

I have not asked aboit bloodwork,yet,I’m going to wait to see what the CT scan shows,I’m finishing up the Colesevelam,I have 4 left,even though it hasn’t helped any.