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Reply to "Crohn's symptoms after otherwise healthy pouch?"

I am J poucher whose diagnosis was changed from UC to Crohns. I had my colon removed in 1992 and J pouch formed/connected in 1993. I had some bumps along the way...fissures, skintags excised to “help reduce fissures”, and a stricture at the inlet of my pouch which they did surgery to open up. In 2013, everything started falling apart. I was diagnosed with iron deficiency anemia and started getting iron infusions. My rectal area became really angry/inflamed and I just did not feel well overall.  They suspected Crohns and put me on Remicade. I loved Remicade but developed antibodies 1 to 1.5 years out. Then I tried Humira and Cimzia but I had no luck with them. I developed two fistulas and went down the seton path and was miserable. I was so sick by the time I got to Cleveland Clinic that they left my J pouch in and gave me a “ temp ileo” for sone relief. I was really a baby with those setons in. Hated them. HA!  Cleveland Clinic and Remzi once he moved to NY told me that they have seen a UC to Crohns diagnosis change in patients and it usually occurs when people have their pouches longer. I guess mechanical/surgical errors/complications rather than disease are more often the common cause in early pouch problems.  I don’t think your symptoms are pointing to definite Crohns either. I have never had a problem eating anything and abdominal pain has not been a prominent symptom for me. I feel like most of my issues are and have been peri-anal. I reAlize everyone is different and it seems like people have some variety in their symptoms. Shen told me that he has seen people with terrible disease and minimal symptoms and vice versa. These diseases are tricky and can be mentally draining with all the what if’s, etc. I hope you get an answer to the cause of your problems b/c the unknown is very frustrating. Good luck and hang in there!!

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