I see a Dr. Cohen in Toronto on May 6 in regard to my options going forward with my J pouch would like some help as to what questions I should ask while I am there as I have to fly from the east coast of Canada at my expense I want to make the visit count. C/R surgs on the east coast are booked for the next year I have already waited almost a year to see this guy!!! Background is UC in 1985 within a year bowel removed and pouch constructed. After a year recovery period pretty good funtion until mid 90's when I started to have periods of obstruction told must be adhesions , live with it. Cut out all fruit, veg. and fibre, two years ago finally could not eat lived on ensure broth and other fluids they finally did surgury two areas found to be mostly strangulated. Repaired but still could not eat solids. Scopes found areas of idiopathic IBD as well as a granuloma told must be CD not UC also an area in back of the pouch where there is old fluid may be a former leak? Also have a fistula between the vagina and just inside the anus. Have tried methotrxate, Humira no help. Am on Pred 10mg and Entocort they have helped but my GI says I can not stay on the pred for ever wants me to consider surgery hence the visit to Toronto. Am unsure as to what I should ask him. If it is CD more surg.? is not a good plan. If back to an ostomy I think the pouch should come out as it will still have inflamation and require meds so I am no farther ahead then just leaving it and stay on the pred. I started on the pred. at 20 mg but was able to come down to 10 after we added the entocort. I will try remicade as a last resort before agreeing to surgery. Thanks in advance for your help. Shawne
Original Post