I am sorry to hear that your recovery has been difficult. You can meet several other FAP/colectomy survivors at www.j-pouch.org I don't think there are any FAPers on this site so if you want to network with others who share your diagnosis please check that site out.
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