Hi everyone-thanks for all the support!
Let's see if I can answer some of your questions....
Dr. Ky meant my seton (she called it obsolete. I found the wording a bit odd, too) was either
a.) already healed and should have been taken out
b.) should never have been put in because it is just under the skin and not connected to the big gaping, oozing mess that popped out where the fistula plug used to be. She will know more when she does her exploratory surgery next week.
I am very impressed with Dr. Ullman. I met with another Dr. that works with him 1st but he spent at least 30 min. talking with me. I was in the office for almost 2 hours so they really took their time with me and I loved that. He told me that I could not possibly have anything other than crohn's and was shocked about what I had been through. (I am sure he has seen it all,too!)One of my GIs took me off of all my meds and that's when things got so much worse for me. Most GIs should have seen that as a sign...... He was very confident in his diagnosis and gave me many reasons for it, such as the skin tags (both my Drs. here said not necessarily CD related) and the crohnic abscesses that cannot be stopped, among other things. He also picked up on something in my Camera endo results that my own GI did who did the procedure did not. He even saw problems with my seton and knew that was why the remicade is not working. My GI here doesn't even know anything about setons. There's a lot more but this post is already too long.
Dr. Ullman managed to let me know that my current treatment was completely wrong but he was so professional about it. He did not discredit my past Drs. He simply said there were some missteps taken along the way and he said he was so sorry for what I have been through. He seems down to earth and approachable and very friendly. He was very confident that he could help me and did not make me feel like a freak that he did not know how to treat which is how every Dr. I have seen in upstate NY has made me feel. They all keep giving up on me.
I am a bit annoyed that I have to drive 3 hours to see a good Dr. but I suppose I am also very lucky that I have an excellent insurance plan (just my $18. copay)that allows me to do it and that I don't have to go all the way across the country to see the "best of the best". Riding for 3 hrs. in a car after exploratory rectal surgery is kind of freaking me out but I'll deal with it.
I can always count on you guys for support and I will let you all know what happens