Hello fellow J-Pouch members. My road has been a long one so my quick summary is UC diagnosis 1992; J-Pouch Surgery 1999; several bouts of Pouchitis 2000-2012; several Abscess/Fistula procedures 2012-2014; constant Perianal Excoriations 2014-Present; monthly Remicade infusions from November 2018-Present. My anal area currently looks like a war zone with no relief in site and no cure for the issue. Surgeon states he can't remove them because they will just return. PCP and Gastroenterologist flat out refuse to write me a script for pain. PCP recommends i just call it quits and get an ileostomy. I think this is all due to the crisis and not because they think i will get addicted but because of all the additional hassle and checking the government will do against them. What I don't get is when will these docs start treating our symptoms like a lifetime debilitating issue? Do we tell Sickle Cell Disease people to just suck all the blood out their bodies, Spinal Lumbar sufferers to have their spine removed, Knee deterioration people to have their leg cut off? So I am trying to find out if any other people have this challenge and what steps have been taken to find some type of relief.
Many Thanks