@Jan Dollar posted:I know you have gotten some very forceful recommendations against using your current colorectal surgeon, but I am going to go a different direction.
There is a huge value in a surgeon you already have a rapport with and have trust in her skills. If she had not performed j-pouch surgery before, I would recommend you go elsewhere. However, she does perform this surgery, and nobody performs it frequently, as it is not that common of a surgery. She is a qualified colorectal surgeon too, so there is that. J-pouch surgery has been around long enough that the technique has been pretty much standardized and the more difficult hand sewn connection is quite rare (and also more likely to be a source of complications).
Another issue is follow up. Are you prepared to travel for follow up? You will likely have a multi-step procedure. The fact that you will be going back and forth is something to consider. Complications can and do occur with the best of surgeons and hospitals. Sure, top surgeons and centers often get very good results, but it can be difficult to get appointments, or even responses to your questions. Not a given, just something to think about. When I was sick and facing surgery, the last thing I wanted to do was travel.
Bottom line, there is no RULE about this. I know you came here for advice on this, but please consider all your options, and the pros and cons of staying local, or not. And please, do NOT listen to strongly worded warnings of doom. I actually had a general surgeon do mine way back when (1995). He projected confidence, spent ample time with me to explain every step of the surgery, and even called me at home. He became chief of surgery and later headed up the bariatric surgery department. He was a great guy, and in my backyard. I had complications, but not due to his lack of skill. They were due to my deteriorated condition.
I wish you the best in your decision on this. The decision to have surgery is difficult enough without feeling like you have to conform to other people’s advice.
Jan
Thank you so much, Jan! I really appreciate your perspective and you sharing your experience. I'm torn on what to do and keep going back and forth! But I completely agree...bedside manner and having someone I know and trust are huge to me! Also, the follow-up is a biggie for me. That would end up being A LOT of travel! My mom told me she could fly out and be with me for the first surgery, so that made me feel a little better, but I would still largely be on my own the rest of the time. One of the downsides to being single and not having family closeby.
Right now I'm back on a course of prednisone and feeling okay for the moment, but I know once I get off it, my symptoms will come back again. At least I have a little time to make a decision and I don't need emergency surgery as of right now.