I’ve been traveling and just got home, so just now I’m finding time to check in.
Blueflame, I have been on one biologic or another for over a decade. It was for enteropathic arthritis and I did not develop chronic pouchitis until a couple of years ago. I did wind up taking antibiotics chronically, but my GI did not like the long term issues with them. Ultimately, he encouraged me to start Remicade with oral Imuran. That was about a year and a half ago. I was able to completely stop the antibiotics and my pouchitis symptoms compketely resolved. But, I did gain weight on the Remicade, over 30 pounds since starting it. So, I am not happy about that. I had gained back some weight I lost from a program while on other biologics (Humira, Simponi, Cimzia), but not as much or as rapidly as the Remicade. Maybe it boosted my appetite, but it definitely is something I need to address.
Rustyskyline- I think to compare having a colectomy and j-pouch procedure for presumed UC that later manifests as Crohn’s to performing a double mastectomy when no cancer existed is a false comparison. You are entitled to believe what you want, but that does not make it a realistic approach.
First, IBD is very difficult to diagnose accurately, even today, let alone 20 years ago.
Second, IBD can change over time so that the real underlying disease becomes apparent as the disease progresses. Unless all the clues are present, you cannot be sure. While there are some features that can confirm Crohn’s, you can never fully rule it out.
Third, a colectomy is absolutely appropriate for severe colitis even with a Crohn’s diagnosis (it is just the j-pouch that would be in question, and even that is not an absolute). So, if your colon was trashed, it needed to come out regardless of the diagnosis. The difference would be whether you wound up with an ostomy or not. So to presume that you would avoid surgery all together if you had Crohn’s is not correct. Patients with Crohn’s actually have more surgery over time, due to strictures and fistulas.
So, while I can understand disappointment and anger with a changed diagnosis, outrage seems out of place. Doctors do the best they can with the tools and knowledge base available at the time. Crystal balls are not in their medical bags. They are humans like the rest of us.
Jan 