I was hoping to get a good report about your symptom improvement on entocort. Like Dr O. explained, it may take more time.
As far as the bowel thickening goes... I have a friend whose daughter had an ulcer at the opening of the jpouch and our surgeon basically bypassed the ulcer and preformed what I would call another reconnect to the opening of her pouch (basically created another inlet I think).
What I am wondering is if this inflammation cannot be controlled to the point of opening up the area of your jpouch inlet, would it be possible to surgically remove(bypass) the diseased portion of the bowel and basically perform another reconnect to the pouch with healthy bowel that is further up your intestinal tract. Because I am not sure about how the inlet is designed per se with a jpouch, I am not sure if this is a viable approach or not.
I have to admit I am bummed about your description of the bowel series testing, especially with the volumun. I may be heading this way if I cannot get some of my symptoms under control. I am currently bleeding at the anastomosis even with canasa and not sure if this is coming directly from my pouch or just the small ulcer I have at the anastomosis.
My next steps are a pouchogram to check for functional issues followed by the small bowel series. Life keeps getting more fun by the day.
If I did not despise the ostomy so much I would just yank this thing and be so over the last year of my life since having this surgery.