I don't have experience but know that if you can't get answers or have problems with your applications -- as many people do -- your Member of Congress can help. Really! If they ask the agencies on your behalf, things will happen. (I was once a "caseworker" for a U.S. Senator).
I hope you can find some relief from you pain, and peace with your decisions.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares.
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder at first, now Forte pills. Doing much better, but still having some bad days.