Collagenous Gastritis: What treatment(s) work for you?

I too have been diagnosed with collagenous colitis, a miserable condition. None of the oral medications have given me any relief so the specialist wants to start infusion therapy (waiting on approval from Medicare). My weight has gone from 170 lbs to 121. It has changed my life and made me almost a recluse due to frequent trips to the bathroom and many accidents. Let me know how the medication works for you.

@fdixon63 - I was diagnosed with collagenous colitis 13 years ago. I was initially treated with Methotrexate injections that stopped the non- stop diarrhea. Budesonide should also work.
It is an autoimmune condition- - a trigger, such as a medicine, was never found.
The autoimmune intestinal condition returned, but without the continuous diarrhea. I was later treated with more immunosuppressive medication.
In your case, I would try the Budesonide. It is safer than Prednisone because it’s not absorbed by the body

Morning. Thanks so much for your experience with this type colitis. Let me understand what you're saying. Is it somewhat a temporary fix and symptoms return? I did not know it was an autoimmune condition. I also have lichen planus and have been able to detect certain triggers with it but a "surprise" sometimes will pop up. Guess that is also the case with colitis. Gut issues can be quite a mystery to diagnosis and treat. I've been on the medication for 7 days and so it is a little early to determine any results. Again, thanks. Hope some others will give some input. Take care.

This website was very helpful to me when I was diagnosed with microscopic colitis, which went into remission a few years ago. https://www.perskyfarms.com/phpBB/index.php
Lots of information here. I took Asacol for many years, which was helpful. Best to you in dealing with this frustrating disease.

I was diagnosed with Collagenous Colitis - CC in 2009. However, I'm pretty sure I was dealing with it long before then. I'm at the Budesonide - Steroid point now after going through the Pepto Bismol regimen last year. With a significant weight loss - 40 pounds - probably due to malabsorption of nutrition in my gut, I'm on a pretty gluten, dairy, etc. free diet. Take several supplements to make sure you have some nutrition. This disease also makes me very angry because the GI doctor community does not support a potential of food intolerance or trigger foods. Thanks to Mayo for at least recognizing there is something more than drugs to help live with this disease.

I would suggest you take Budesonide for several months. Only problem, it's quite expensive, so look to GoodRX and Single Care for help with the cost.

Good to hear from you with your experience. What oral medications were tried--with no relief.

I replied once but maybe didn’t go thru. My oral medications were: Budesonide, Diphenhydramine, Cholestyramine Resin. I have the number of a broker out of Idaho that can get you your Budesonide for $92 a month. If you would like the number let me know.

I have had CC for many years. At first, I took many of the meds already mentioned here - which did not help. I went to a different gastroenterologist who prescribed OTC Imodium. As simple as that sounds, it works for me. I take 2 - 2 mg tabs: 1 in AM and 1 in PM.

Hi vcastaldo... Thanks for your input. Good ole imodium. It is my normal "go to" for help calm my gut. It's funny, sometimes I can tell when I get up in the morning, before having a sip or a bite, that there is going to be an issue. It is the reason I can have much of a social life at all. I will finish taking this 3 month treatment plan (Budesonide) but if that does not resolve my problems I may try taking the Imodium regularly. Glad you found what works for you.