I was diagnosed with FAP in 1981 and went to Mayo Clinic in Rochester where I received a thorough examination that confirmed the diagnosis.  I was scheduled for surgery on the third day of my visit.  I would expect that you would receive a comparable examination at Jacksonville followed by their recommendations. Be sure to bring all of your medical records, including any scans you had (most likely on a CD). They should be able to schedule surgery (if it is recommended) based on the urgency of your condition, perhaps during your first visit.  You should be open to any recommendations they might have that would not involve surgery.  Hope things work out well for you.

You have indeed exhausted almost all pharmacological options.

I would make sure that I have tried alternative healing modaltiies like SCD, low dose naltrexone, medical cannabis (if possible to try), and maybe even fecal transplant. I say this because surgery is irreversible and if it goes badly... you're going to be very upset.

You need to be referred to  highly skilled colorectal surgeon. A GI can talk about surgery, but it's obviously important to hear from the surgeon himself. I highly encourage you to talk about the possibiliyt of a premanent ened ileostomy. It is an equal (in some ways superior, despite other downsides) option that most of the medical establishment will not seriously discuss with you, maybe only discussing jpouch.

Otherwise, focus on staying positive, as I remember how terrifying this period in my life was. Having an optimistic mindset of "I will live, I will have a good life again" is very important.

I have been going to the Mayo Clinic in Rochester since 2012 when my J-Pouch got to be more than my local GI could handle.  I now have a permanent ileostomy and it is 100 times better than my temporary one was in-between my surgeries. I know that every thing that would help me keep my j-pouch was tried. I am in the minority as most j-pouches work well.  My GI there also referred me to several other departments to help with other health problems of mine.  He was looking at the whole person and not just my colon.

I get calls or emails returned sooner from the Mayo Clinic than I do with my local doctor offices.  I suggest you write out a list of questions to bring with to your appointment.  I bet all your answers will be addressed before you even need to ask. It's scary but U.C. is a nasty disease.  

Good Luck!

It took me three years of trying just about every medical intervention out there before totally accepting having J-pouch surgery to address my ulcerative colitis situation.  A consultation with a wonderful GI doc at Cedars Sinai in Los Angeles convinced me enough was enough when she said to me, "You have learned to cope too well.  So what if you have 6 B.M.s a day!  You're having many more than that now with no control!"  That was it!  It has been 15 years and I'm convinced I made the very best decision for me.  Whenever my surgeon asks me how many B.M.s a day I have, my response is always, "Who's counting?"  No urgency.  Complete control.  I'm in control and not my digestive system!  Best decision I ever made!

I waited too long to have surgery, to the point where my colon was, according to my surgeon, dissolving in his hands when it was taken out (from the inflammation).  Long story behind that but the bottom line is that when the writing is on the wall, you just have to read it.  A lot of the "I am thinking about having surgery" threads posted on this board leave one with the conclusion that the author is waiting for a miracle to happen.  Miracles don't usually happen.  This is not the movies, it is real life, real illnesses and real problems.  I think it's a lot harder for someone who is younger and has their life ahead of them, or those with family depending on them.  When I had surgery I was in my 20s and was just getting out of law school and didn't know how all of this would impact on my future.

The best advice I read here is to get a very good colorectal surgeon.  In my case this was IMHO very important to the longevity of my J Pouch which is now 24 years and counting.

Thanks for the responses! That's great advice CT.  I am, no doubt, in denial. And have been since dx'd. I'm young(ish) 38. Great family, 9 and 5 year old. Very active, and healthy, until this. I know the writing is there, and I'm very close to accepting it, but still just in limbo. Still waiting to hear from Mayo for an appointment, and what is likely inevitable news. 

Thanks again for the replies.