@lorna posted:Hi CT barrister what made you eventually go to biologics, was that when the antibiotics stopped working?
The answer to this question is somewhat complicated. Back in 2008, my then GI doctor, Dr. Oikonnomou at Yale, a Cleveland Clinic trained and mentored protege of the world famous pouch specialist Dr. Bo Shen, conducted a series of tests on me because my scopes revealed that I had significant inflammation at the J Pouch inlet and also in the neoterminal ileum. The purposes of the testing which included CT Enterography, MRI Enterography and Prometheus, was to determine if I was a Crohn's diagnosis because the pattern of inflammation in the neoterminal ileum was not readily identifiable as being due to backsplash stool, and to identify the specific areas of inflammation in the ileum. All testing was inconclusive; the Prometheus came back negative for Crohn's and UC despite obvious inflammation in the rectal cuff, the pouch and neoterminal ileum.
At that time- maybe 2009- Dr. O had strongly suggested I consider biologics. I resisted this, and the chief reason I resisted this is that my scopes were worse than my symptoms actually were. My symptoms were actually manageable with antibiotics, but he did not like my scopes.
Fast forward to 2015. In the intervening 6 years, Dr. O- who was great, BTW, one of 3 great GI docs I was blessed to have- continued to recommend I go on biologics. I continued to resist for the above mentioned reasons. In early 2015, Dr. O sent me a letter advising that he had accepted a position at Mount Sinai and would be leaving Yale. I then switched to a new GI, Dr. Myron Brand, a seasoned and excellent GI doc who was no stranger to pouches and he came highly recommended by people in my CCFA support group at the time.
Dr. Brand did one scope on me and strongly recommended that in his view, antibiotics, while addressing my symptoms satisfactorily, was not getting the job done on the inflammation. At this point, after looking at the scope pics, hearing his reasoning, and his articulation of the results of Remicade on pouch patients from clinical trials, I agreed to go on Remicade.
Right at this time, however, in June 2015, I was diagnosed with thyroid cancer and had to have surgery for it. This delayed me going on Remicade by 6 months, because of the surgery/radiation I had to have to treat the cancer, which was ultimately successful. You can't do that stuff and take biologics.
In November 2015, I finally went on Remicade, and by the time of my next scope in June or July of 2016, I was showing significant improvement in terms of the inflammation in the pouch. After that I have not looked back, and I was eventually able to wean off antibiotics completely.
So that is basically the story.