I am assuming your original diagnosis was UC and you have now, after several surgeries, been diagnosed with Crohn's. This, sadly, does happen. There are no definitive tests to distinguish UC from Crohn's and it does happen that UC patients will have surgery and then learn months or years later that there diagnosis was Crohn's. You can meet several others this has happened to at www.j-pouch.org There are sevearl people there who have been able to keep their jpouch and manage their Crohn's symptoms with drugs and also just as many who have opted for a permanent ileostomy.
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free