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

It’s listed in the literature that Antibiotics can cause it,especially the one I was on,Amoxicillin.

Hello boy4. I am Pam and I have microscopic colitis, collagenous variety. It hit me out of the blue in 2019 and was sheer hell. After red herrings and dead ends while I was literally on house arrest. I was fortunate to find an ace Doc. I was treated initially with a full course of Budesonide. It was a miracle drug within days! And then a year later i relapsed. Another shorter round of Budesonide. Then a year later I relapsed again. Now I am on lowest dose as maintenance. So far so good.
This relapsing is sadly not uncommon. But we are lucky.

So. Known and validated medication triggers are

SAIDs:
NSAIDs, including ibuprofen and aspirin, are commonly associated with both LC and CC. Studies have shown a strong association between NSAID use and an increased risk of CC, and rechallenge with NSAIDs can lead to recurrence of symptoms.
PPIs:
PPIs, particularly lansoprazole, have also been linked to both LC and CC.
SSRIs:
Selective serotonin reuptake inhibitors (SSRIs), especially sertraline, are another class of medications that have been associated with microscopic colitis, including both subtypes.

I have been off NSAIDs and PPIs for three years now. Ditto for PPIs. I take Pepcid instead as it is not associated with this disease. I went off my SSRI and then phased back in with no adverse result.

I drink minimally because I also have RA and treatments for that are hard on livers. But some people report avoiding it for colitis.

I did a lot of research on therapeutic dosing of anti diarrheals. I settled on Pepto bismol, liquid caps. I took 3 caps 3 times a day. An entire study was done with that dose. And it worked. Stools turn black and sometimes your tongue does too. But I could have cared less. . Once it seemed under control I reduced to 2caps three times a day. And then 2 caps twice a day.. give each reduction time. No point in having to start over.

I did a BRAT diet when i was flaring. Just avoid roughage. I began to add small amounts of fairly bland sautéed ground turkey NO DAIRY OR SODAs!!!
when you start adding foods back, easy does it. Add back one food at a time.

Good luck. It is a wicked witch of a disease but it can be managed if not conquered.

Happy to answer any questions you have.

Jumping in late but i am confused. Was the expectation that Colesevelam would improve your Colitis? And was your colitis diagnosed based on colon tissue biopsied during a colonoscopy?

I was diagnosed with microscopic colitis several years ago. I would go into remission for months at a time and have occasional flareups. This current flareup has lasted several months. I choose not to go on a steroid medication. Has anyone tried a naturopathic route? There are colon cleanse regimens too. I started taking turmeric daily, which seems to help some. My Dr. referred me to a functional medicine doctor (haven’t seen yet) I’m also trying to follow a colitis, friendly diet plan and go gluten-free. Quite the adjustment. Would love hear other’s Views on this. Thanks

I have exactly what you have . I seem to be in a flare more than not. I’ve been on the low. FODMAP diet Which is very restrictive. It’s recommended you add foods in gradually after six weeks. It turns out I can’t seem to add anything in. I’m hungry and I’m want to eat. Eating is Such an important part of socialization. I’ve posted this before I believe on this website, it may have been on the Crohn and colitis website, but I am Electing to have my colon removed because I can’t do the cleanup anymore. I have severe incontinence. I’ve been on Remicade and Entyvio and I’m pretty sure one of them was very harmful to me. I’m suffering with all kinds of arthritic pain and weird random illnesses since. Ive had a positive ANA which nobody seems to be able to tell me more. I wish you the best and if you haven’t visited the crohn’s and colitis website, it’s a valuable tool. So much support and encouragement. You don’t feel so alone and actually you end up Being thankful that you’re not as bad as the next person. All of us with IBD are true warriors! I wish you the best.💞

I forgot to add that I tried a homeopathic doctor, but Did not see an improvement. I do take Blackseed oil and currently I’m taking oregano oil. I want to taper off the oregano oil soon because if you take too much I’ve heard it’s not good.

Hello boy4,
I think Lymphocytic colitis and microscopic colitis are either the same or similar types of colitis which are diagnosed by biopsies taken during colonoscopy. I too was diagnosed 2 years ago and have been on 3 mg of Budesonide daily since then (no stopping). I too have noticed purple splotches on my arms that come and go. They look like bruises but do not hurt at all. I also have thinning skin that tears easily, lots of bandaids! My blood count tests show no evidence of anemia or side effects of the "bruises" which are not really bruises.
The Budesonide is working quite well for my diarrhea. I used to have 6-10 episodes of diarrhea a day, now I usually have 1 BM each day, a #4 on the Bristol scale which is fine with me!
I would rather have purple patches on my arms than diarrhea and wish you well in your recovery.
Margot

I was diagnosed with lymphocytic colitis in April 2025. The gastroenterologist put me on the step down regiment if Budesonide. It seemed to help but all the awful symptoms came back once I was off of it. He put me on a daily dose of 3mg and that doesn’t seem to really help. I have a cousin who also deals with this condition and has MS. I read that the majority of people with LC have an autoimmune disease. I haven’t been diagnosed with one and it doesn’t seem as though I will be screened for one. Can anyone recommend who to talk to about being screened or tested for an autoimmune condition? How are you all dealing with your diet with LC? Anything you would like to recommend not to eat, please share! TIA!

I have been ok lately,my GI Dr put me on an ATB called Xifaxan for two weeks,plus a probiotic VSL #3. I’ve only had one bad attack in the last 2weeks after I had made tacos the nite before.i can’t eat raw or high fiber veggies. Maybe a rheumatologist would be the Dr to see? Hope this helps.