Chronic Active Enteritis

BishMember

I finally got in to see the magnificent Dr. Shen at Cleveland Clinic. My biopsy came back and I have chronic active enteritis with pyloric gland metaplasia. So he put me on Entocort for 30 days taking 1 pill/3x a day. Then if this works, he would like to do maintenance therapy of 1 pill/1x a day. I do feel a little better, but I refuse to be on a steroid for a long period of time. I was on prednisone for almost a year and it was horrible and the side effects are huge. They cause problems later in life especially if you've been on high doses for long periods of time. Does anyone know if there is alternative meds? Can I change my diet? I would like to take the steroid to get everything in the gut calmed down but after that I would like a more natural method to keep things under control. Also, I was never told this by any doctor but told by friends and reading about it more and more -- am I allowed to take ibuprofin or NSAID's? Thanks for all of your input!!!

1/14/139:12 PM

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Jan DollarModerator, RN, retired

This is sounding like Crohn's disease. It may not be it, but something similar, since Crohn's is often described as regional ileitis. Usually with Crohn's you need maintenance medication. Not necessarily steroids, but something. I can't believe that Dr. Shen would keep you on Entocort any longer than necessary. The good news is that Entocort is considered basically topical and poorly absorbed.

What does Dr. Shen tell you about long term plans/goals.

Generally, they say to avoid NSAIDs with IBD, especially if you have pouchitis. But, I have arthritis, and tolerate short courses when I have a flare.

Jan

1/15/131:10 AM

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BishMember

The tests showed negative for crohn's. I called for my test results, they told me that they typically don't do follow up appts to go over test results. I think he wants to see how this works for 30 days, then we'll go from there. I will express my concerns about the steroids. Thank you for help!

1/15/135:36 PM

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Jan DollarModerator, RN, retired

The problem is that "negative for Chron's" does not mean it isn't Crohn's. It just means that they cannot confirm Crohn's. Still, this could just be pouchitis. If you HAVE been taking NSAIDs more than just the occasional dose, this could be due to that, and it should resolve if you avoid NSAIDs.

The treatment plan makes a lot of sense to me, particularly if antibiotics are not working for you. But, I can see your reservations about steroids, even at a small dose. So, I think discussing what the working diagnosis is would be a good topic, even if there is not any certainty.

Jan

1/15/136:30 PM

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