New Diagnosis, now what?

[Kathy1109]

I have posted on here a few times about my husband. He has had a very unusual case. He presented with severe anemia but no other symptoms. Scopes revealed multiple ulcers in the duodenum that were bleeding and some erosions in terminal ileum (colon was clear). All biopsies were clear, bloods were negative, etc.. Dr. felt it was crohns but everything was negative. The Prometheus test came back today and was positive for crohns. My husband has been on Entocort and will remain on that. The doctor added Pentasa (2 capsules four times a day) to the mix. He also ordered a CT scan. Does this sound like a reasonable plan? There is no way to guage progress since he isn't having symptoms. The doctor seemed to be wavering back and forth on treatment which made us a bit uneasy. I was also reaching out to anyone with duodenal crohns--what worked for you? I am concerned that the Entocort will not work for the duodenal inflammation and at this point we don't know what the rest of the small intestine looks like. At the end of my rope with this process. It has been months of tests with no results. Also--have any of you with few symptoms remained symptom free with treatment? I am worried about what the future holds. My husband is 42. He had iron deficiency anemia 15 years ago that was not followed by a GI so I suspect crohns may have been the culprit then too. Thanks for reading.

 

[24601]

I think it sounds like you should get a second opinion from a highly regarded GI who specializes in Crohn's, particularly duodenal Crohn's.

I don't have duodenal Crohn's but if your husband does then neither Entocort or Pentasa are appropriate treatments as neither will treat disease higher in the digestive tract than the terminal ileum. My disease is located throughout the jejunum and ileum and early on I was prescribed the same largely inappropriate treatment for my disease.

Proper disease monitoring with blood tests, fecal calprotectin and appropriate imaging is vital for any Crohn's patient as symptoms do not always correlate with inflammation but when a patient is asymptomatic this monitoring is perhaps even more important as I think it is easy for both patient and physician to be complacent about the silent damage this disease can do.

And at the end of the day the state of disease and efficacy of treatments as observed with appropriate imaging is the most important indicator as some Crohn's patients do not have raised inflammatory markers either (when you said bloods were negative is this the case for your husband?).

A CT scan (or an MRE) is definitely a necessary step to assess those parts of the small bowel that can't be seen with scopes and repeated small bowel imaging combined with scopes sounds likely to be the best way to monitor your husband's disease and it's response to treatment.

I know this seems like an endless process but I think a second opinion and probably, based on this GI's treatment plan, delay in ordering complete small bowel imaging and your lack of confidence in him, a change of GI will be very worthwhile.

With disease high in the small bowel I would expect first line treatment to be prednisone or exclusive enteral nutrition and maintenance therapies to most likely be an immunosuppressant and/or a biologic.