Thanks for the support. Although my surgeon and local GI are quite knowledgeable about
pouches, I'm going for a 2nd opinion at another major medical center. I'm also looking into visiting Bo Shen (not simple, since I'm currently abroad from the US). I doubt they will give me anything new to work with, but if they confirm that I am really dealing with chronic pouchitis, it will at least give me the peace of mind of knowing what the situation really is and what my options are. I am looking into a surgical technique called TAMIS which might let me have pouch excision more safely, if and when it comes to that.
Although I am impressed with Entyvio's safety, for the most part I'm unwilling to do biologics and systemic immunosuppressants after my experience using them for UC. The jpouch also just isn't worth the drug risks... I cared so much about
my colon, but what I have now is not half as valuable to me as my natural large intestine was.
There are times that I feel like the perm ileo is the best solution to all of this. Less surgery, less adhesions, no risk of pouchitis, no meds after surgery, TI in tact... I can't see going through this and taking drugs afterwards.
I think you hit the nail on the head. This is how I feel about
my situation. That outcome would have been much better than the one I have now, and it would have been easier to obtain. At this point, the question is how bad will the extra adhesions, additional bowel resection, and all the other scary potential complications be if I proceed to pouch excision. I've been keeping up with other people's stories. I hope we can still have a happy ending.
22 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs not successful
Supplements, LDN, antibiotics, SCD probiotic yogurt,SCD/Paleo diet,FMT,
Nothing worked. 12/2014 Jpouch w/ temp stoma 4/2015 ileostomy reversal