I am so sorry to hear about what you're going through. I dealt with Ulcerative Colitis for about a year before my body became completely unresponsive to medication and I had to have my colon removed. I had an ileostomy for 6 months and am now healing from takedown surgery.
A friend of my dad's had these same surgeries and has been guiding me through the whole process. After getting pouchitis several times, she found this doctor and after working with him never experienced pouchitis again. I intend to work with him myself soon to hopefully prevent any further issues or complications. I realize it's not the same, and your issues sound much more severe, but if there's even a chance that he could help you I figured it was worth sharing. He does free consultations, so maybe you can start there! I hope you find answers and relief soon!
Dr Albert Snow: