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

Hi, anyone out there..started amitiza and side effects are really awful. I have always suffered terrible allergies to most drugs. Has anyone experienced this. I’ve been on here for a few years because in 2921 due to severe motility I was scheduled twice for total colectomy but wanted to fight so I canceled both times. I’m running out of steam. I’ve tried everything,trust me and now backtracking a third time. Maybe it’s just time to toss in the towel and get the surgery. I have no life,always sick from drugs or over the counter meds. We’ve tried everything. Any ideas anyone.
Thanks…Joanne

@mothermary1
Welcome back Joanne! I’m sorry you are still suffering without relief.
I’m taking Amitiza and Motegrity now. Some days good others not. Helps in the long run I think.
I got a CC letter this week with some interesting information.
It’s an implanted nerve stimulator called Medtronic’s InterStim.
This indication was for fecal incontinence so I don’t know if it would apply to you.
Check it out!

After taking cholestyramine and using Pepto Bismol for a long time, the cholestyramine stopped working, along with the Imodium I took off and on. Then I developed A-fib which meant I could no longer take Pepto Bismol because it contains aspirin. Finally, after checking online, I eliminated lactose, gluten, nuts, uncooked fruits and vegetables, and so forth from my diet. It changed my life! I'm keeping a food diary now to learn how to eat. Why didn't my gastroenterologist tell me about this?!

Have you been tested for celiac disease?

I did and it sent me into a 3 day panic episode. Some find great relief though.

Colestipol has help me tremendously.

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.