If you have FAP you might want to visit www.j-pouch.org as there are many FAP members there. There is also a FAP support group on Yahoo but I don't have the link. Your surgery is different than mine; I have a total proctocolectomy with a jpouch. My freqeuncy is higher than yours but it doesn't interfere with my life. I am a long distance hiker (100-200 miles), backpacker, and traveler. Since surgery I have hiked 200 miles across England, 100 miles through both Scotland and Ireland, hiked Patagonia, hiked Turkey, the Grand Canyon, backpacked in the Sierras, hiked 80 miles of the John Muir trail, and traveled though Dubai and Abu Dhabi. Surgery has given me the opportunity to stay active. I have total control; my plumbing works just like it did with a colon and rectum the only difference is the increased frequency.
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