Out of state surgery options (& TX/FL/NJ surgeon recommendations)

Apologies in advance since I'm posting this in a few forums, but trying to get as much information as possible.

I've been dealing with Ulcerative Colitis for about 6 years and was having relatively mild to moderate symptoms until this past year, where I had a pretty nasty flare at the end of last year. Currently, I'm still dealing with/possibly getting under control a flare that started the end of June that was the worst I've ever had and pretty much had me stay home from work for 2 weeks. I won't say I went 20+ times a day, but I did certainly feel like I was going a lot and the pain was very bad.

I started on Remicade and have done 2 infusions. I don't notice a dramatic difference yet, but I am better than I was 2 months ago. That may be the Remicade or it may be the Prednisone that kicked in. I'm tapering down on the Prednisone and am still experiencing some cramping, urgency, burning and other mild (if you can call it that) symptoms. Starting to wonder if the Remicade will work or if I should prepare myself for another treatment.

Anyways, aside from all of this, I've seriously been considering surgery - primarily J-pouch, if it will give me a great quality of life. I'm hoping I'm a candidate since I think I technically have indeterminate colitis (although I was initially diagnosed with Proctitis and aside from my recent GI doc, was told it is primarily UC related). I'm trying to figure out what is the best way to get information/prepare for something like surgery.

Here are some of the internal questions I'm struggling with not sure how to handle:

1.) One of the biggest things I'm uncertain of is who/where I'd go to get a consult or surgery. I live in Austin TX. My family lives in both NJ and in Boca Raton Florida. I've heard the Cleveland Clinic is one of the best places for this type of surgery. If that is the case, I'd have no problems getting there to get it done. But naturally, if there are surgeons that are in any of the areas I listed, that'd be even easier to deal with.

2.) Assuming that Cleveland Clinic is who I go with, what would be involved in obtaining information/starting dialogue about whether this is something I should consider? Do I call a specific doctor? The IBD department?

3.) For those that have dealt with surgeons there, is there a specific surgeon you recommend or are they all highly recommended?

4.) I'm a bit afraid of getting surgery there and then dealing with complications after the fact. How is this best handled when your surgeon does not reside in the same state? Do patients typically get a local colorectal surgeon that they are also in contact with in the event of complications? I'm guessing it's not really viable to have a complication and then try to take a flight to Cleveland if something comes up. I do figure that staying there a few days after being discharged is probably ideal after surgeries just in case something comes up immediately, but all of this is unpredictable.


I guess in the end, surgery is something that's on my mind but is an uncertainty still. I just want to be mentally prepared and have the knowledge if it did come to that. But most importantly, I want to make sure I deal with the best surgeon I possibly could since I hear so much of it comes down to the surgeon and the procedure. I'd rather travel and get all my ducks lined up so to speak, with the best possible outcome that I could hope for. Any advice/information would be greatly appreciated. Hope you all have a good day :).

Have you talked to your GI for surgeon recommendations? I would guess that some if not IBD programs have colorectal surgeons they work with, that's how it works with my GI at Rush University in Chicago. My GI did tell me you want a surgeon who has does the procedure at least 50-100 times. I would look into having it done laproscopically done as well if I were you, from my research it reduces your recovery time considerably. I know that the Cleveland Clinic and the Mayo Clinic are the best out there, but it will come down to the surgeon and you might be surprised and find one closer to you--I would also worry about complications and traveling. Are you considering surgery where your family so you can get some help afterward? I can certainly understand that. Good luck.

     I live in NJ too!  However, I don't trust the hospitals or surgeons in my area to perform major surgery.  I, like ByeByeUC, chose to have my surgery done in Philly.  My surgeon would not do a j-pouch on me because of 1)my age at the time which was 63 2) extensive use of prednisone over the years and at the time of surgery I was prednisone dependent for almost two years and 3)other health issues, such as high blood pressure and high glucose levels caused by prednisone.  He said I was too high of a risk for j-pouch.  When I mentioned I had no problem with the idea of having the "bag", he scheduled my surgery.  He suggested I wait six weeks because he wanted to make sure the Humira was out of my system before the operation.  Over the twelve years I suffered with Ulcerative Proctitis I tried 6MP (seven years and still didn't keep me in remission), Remicade (failed after the third infusion, and Humira (no change after three months).

     My GI doctor did NOT refer me to the surgeon.  I had to find one myself and thank God for the internet.  My surgeon was Dr. Robert Fry, head of colorectal surgery at the University of Pennsylvania Hospital.  I think he is terrific!  He trained at the Cleveland Clinic.  I am absolutely 100% happy with my decision.  Before surgery I took anywhere from 17 - 25 pills daily plus rectal meds.  I only take one pill a day now and that is for my blood pressure which is easily controlled.  No more Type II Diabetes.  However, I do have osteoporosis...thanks to prednisone .

     Good luck and God bless!