UC is very much a disease of isolation and I think it's hardest on kids. No one wants to talk about or hear about bowel issues. Thank goodness for the internet! There was no internet when I was diagnosed so meeting people with UC was near impossible. Finally our small town started a CCFA meeting and I was able to meet other UCers and Crohn's sufferers. After 10 years of UC I finally met someone else with the disease, it was a blessing to be able to share and connect in a very open, honest, and supportive environment.
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