Hi if you are still around.
My dad had PG...he had it for years before they figured out what it was. He took cyclosporine. A very powerful and useful drug for him, but it kills the kidneys. It was the only thing that worked for him so he took it.
I will go look for you on the Crohn's forum as well.
Best of luck to you.
*Amy, 33, dx with idiopathic colitis July 2009, confirmed UC Sept 2009
Asacol 2 pills 3 times daily
Rowasa as of 10/20/09, starting taper 11/18
Probiotic: Ultimate Flora Critical Care