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

Everyone seems so different with diet that it is hard to say. I have celiac, so gluten zero of course. With colitis, no caffeine chocolate spicy foods or sugar, also very limited processed foods.

I was lucky to get into Dr. Lucille Harris at the Scottsdale Mayo Clinic. Her care advice and colestipol prescription have given me my life back.

No, I'm not sure what celiac disease is, though I've seen the name. I was tested for lymphocytic colitis a long time ago, however, and it was definitely positive. It looks like you know what celiac is, however. Any suggestions?

If you are still eating wheat rye and barley you can get a blood test for celiac, a disease in the small intestine.
If you have cut these grains out of your diet you can do a dna test to see if you have the genes. Lots of microscopic patients have celiac disease.

That drug is for elevated lipids and says causes constipation. Maybe your post for someone else.
Thanks..Joanne

Hi, still not well. Motegrity was awful and Amitiza was too. I have such allergies to most meds. I don’t know if med itself or fillers. Someone needs to figure this out because I’m constantly sick or enduring horrible side effects. I don’t pass hard stools ever which amazes me with such long term constipation. It’s always tiny, soft or diarrhea and mostly nothing for weeks. I do not have incontinence at all. It’s also never as far as my rectum. It must take forever to get there because I’ve been taught to check myself and clear the way but never ever gets that far. I have had many many tests but it’s time to backtrack and do more but my Gastro doesn’t agree. I did smart pill but asked to swallow the camera in case something is missed in small bowel but my doctor thinks I’ve had all the tests since August 2020 that conclude, I have severe digestive motility issues. I see her Friday and I feel she will mention surgery. I won’t do it because I have had BM so I’m keeping my colon.
Thanks…Joanne

It is used for microscopic colitis and works tremendously. It is a bile acid binding medicine, the amount taken can be played with until most symptoms are completely resolved. Budesonide kept me awake all the time so this has been perfect with no side effects for me.

From Mayo:
Anti-diarrheal medications such as loperamide (Imodium) or bismuth subsalicylate (Pepto-Bismol)
Steroids such as budesonide (Entocort EC)
Medications that block bile acids (which can contribute to diarrhea) such as cholestyramine/aspartame or cholestyramine (Prevalite), or colestipol (Colestid)
Anti-inflammatory medications such as mesalamine (Delzicol, Apriso, others) to help control colon inflammation
Medications that suppress the immune system to help reduce inflammation in the colon, such as mercaptopurine (Purinethol) and azathioprine (Azasan, Imuran)
TNF inhibitors, such as infliximab (Remicade) and adalimumab (Humira), which can reduce inflammation by neutralizing an immune system protein known as tumor necrosis factor (TNF)

I happened to find a list of foods to avoid online -- I don't remember where, but I jotted down lactose, gluten, nuts, uncooked veggies and fruits, sugary drinks, alcohol, caffeine... As I mentioned, it has changed my life! Gluten-free things are very easy to find in the grocery stores. I used to assume that gluten- and lactose-free were just fads. Now, I'm a believer! If I eat apple sauce in the morning with breakfast, my day goes very well. Of course, BRAT food -- bananas, rice, apple sauce and (gluten free) toast work well. I used to live in fear of frantically needing a bathroom. Not anymore!

Well, that's not good! I am sorry you had that experience. The info I saw about it was mixed results, so I thought I would ask on this forum to see if anyone had tried. I read that CBD oil can help with inflammation, so it seems like it might be worth a try, but I wouldn't want to have the experience you had, that's for sure! Thanks for responding...