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Reply to "Upset - maybe misdiagnosed and biologics concerns"

I think you are confusing diagnosis in people who still have their colons and diagnosis in people who have had their colons removed which is most of the people on this board. This board is the J pouch group and those who have J Pouches do not have colons, thus UC isn't a applicable diagnosis for those with chronic inflammation of a J Pouch. In this latter group, diagnosis as between Pouchitis and Crohn's doesn't matter and is only the source of money being spent unnecessarily and I have had two J Pouch specialists admit this to me.

If it is important my doctors sure don't think so because they gave up trying to figure it out a long time ago. Two J Pouch specialists, at Yale and at Mount Sinai, have specifically told me my diagnosis will not alter the way they treat me because chronic inflammation in the ileum is treated with the same progression of drugs- antibiotics, topical enemas, biologics, etc. Remicade is the preferred first choice biological drug for inflammation of the J Pouch. 

If you still have your colon the above analysis doesn't apply and that may be where you are becoming confused. Once your colon is gone UC is not a diagnosis, chronic inflammation is pouchitis or Crohn's and the treatments are the same for both.

The Prometheus test is not taken seriously or as conclusive by most diagnostic experts I have spoken to and I was specifically told it is not even the golf or silver medal diagnostic test- capsule endoscopy is gold and MRI Endoscopy is silver. 

I had a UC diagnosis for 20 years, had surgery on the basis of that diagnosis and then after 22 years of J Pouch inflammation my diagnosis is Crohn's - operatively, not conclusively. However there was no evidence whatsoever of Crohn's for my first 35 years having IBD. It developed after I had the surgery and has done so with others. All diagnostic testing pre surgery was UC and all diagnostic testing since surgery has been inconclusive.

If you think diagnosis matters for a person who has chronic inflammation of a J Pouch, please explain why and how diagnosis would impact on their treatment? My own doctors and specialists have not been able to answer this, so if you can I would like to hear the explanation of how diagnosis matters to those in the same situation as me, which is more than a few people on this board.

Last edited by CTBarrister
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