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Still looking for answers

L LisaTMember
Hi everyone, I'm back again looking for some advise/input from all of our experts! Going on 3 years, I've been struggling with strictures and adhesions. MANY scopes, MRI enterographies, and even a trip to see Dr. Sonoda at Weill-Cornell, I still don't really know what to do next. My last two scope 5/4 and 7/3 showed an ulcer and chronic inflamation. Both my doctor and Dr. Sonoda suspect Crohn's, but none of the pathology reports confirm their concerns. I'm on Entocort every morning, but now things are changing. I have pain all over my lower abdomin that feels like I've been kicked or had dry heaves. My pouch functions just fine, no fever, weight loss, etc. I just had blood work done because I'm scheduled to have my right hip replaced on the 16th. (AVN, had my left done 4 years ago) and my hematacrit level was 30. I had a ferritin infusion and B-12 injection to get things ready for surgery. SO, what the "H" do you think is going on? I don't feel awful, just really tired of being in pain. ANY advise would be REALLY appreciated.
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CTBarristerCTBarristerMember
quote:
Both my doctor and Dr. Sonoda suspect Crohn's, but none of the pathology reports confirm their concerns.


Confirmation is not likely something you are going to get or should expect. I am travelling down the same road as you, have had the Prometheus Test, the CT Enterography (both negative for Crohn's AND UC), yet scopes show ulcers and a lot of inflammation in my neoterminal ileum. Now I am going for an MRI Enterography on July 20 which, as I understand it, will be testing for thickening of the small bowel that would be indicative of further inflammation not seen on the scopes.

Whether we have Crohn's diagnoses or not is sort of irrelevant since we are both on Entocort, a traditional treatment of Crohn's. It does not sound as though your treatment is working as well as mine, so you may be on to biologics. Did you discuss this possibility with Dr. Sonoda?
Jan DollarJan DollarModerator, RN, retired
The anemia without active bleeding can be indicative of Crohn's, as the anemia of chronic inflammation is fairly common with Crohn's. It also occurs with chronic pouchitis, so not terribly specific.

Also, abdominal pain is common with Crohn's. Entocort may not be enough treatment for you. Perhaps biologics should be next on your list.

Jan Smiler

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