I have some sort of growth in my stomach - on a tube or somewhere in that area. It has been drained once and it has come back. It is growing. One doc says to not do surgery unless it is absolutely necessary. That one, who I really liked, moved. Another doc says it is growing, and if it continues, it needs to come out. He says there is an 80% chance he can do it laproscopically. My gynecologist, who I respect massively, says the second doc is dreaming. She says it is very dangerous to do surgery on me because of all the scar tissue. Not all surgeries are good surgeries and that I need to be very careful what I decide to do. She says I could end up very damaged if I go ahead with surgery and to wait it out and hope it quits growing (I've had it for a long time, but it has been growing recently.)I have sent records to my j-pouch doc asking what he thinks. But, I want to know what other j-pouchers think. How many of you have had pelvic surgery? What were the risks? How did it turn out? My gynecologist is concerned that the pouch or small intestine could be irrepairably damaged, that I could end up with really bad adhesions or, worse yet, die. She was very blunt and I respect her opinion and honesty a lot.

isn't j-pouch surgery considered pelvic surgery?

kta,

Sorry to hear about your problem. Yes, as I understand it, there are risks to pelvic surgery post j-pouch. Your anatomy is obviously different than average and there is a risk the pouch could be damaged. You may also have a lot of internal scarring or adhesions that could complicate a routine procedure. That said, I would not imagine the death risk would be considerably greater than the general surgical population (there is risk of death in any surgery, after all), but I am by no means an expert, and this may be something you want to get a second medical opinion on, as of course your own situation may be different.

If possible, try to arrange a consult with both your gynecologist and your original colo-rectal surgeon to discuss the benefits and risks, as well as the safest way to go about the procedure while minimizing risk to the pouch. Even better, perhaps your colo-rectal surgeon (or another surgeon familiar with the j-pouch procedure) could oversee the surgery and ensure the pouch is not compromised.

I understand the difficult decision you have ahead of you, that's why it's important to get as much information as possible. Best of luck!

Hi Minnie,

I had a similiar experience and both of my surgeons had similiar concerns. I was very lucky that both the OBGYN (who was the surgeon that needed to operate in my pelvic region) and my GI surgeon (who did my j pouch) knew each other's work and greatly respected each other. I was told that there was a 50/50 chance of laproscopic surgery and not being totally opened up, but that they wouldn't (and clearly I wouldn't) until they started.

But they worked on me together, in the same OR. Is there any chance this would be possible for you? They basically did a team effort of me-and the results were the best of what could have happened.

Please try Spooky's and my suggestion about having your 2 surgeons there together. It is very important with your pouch not to have some surgeon going in there without guidance.

Good luck!

I have asked the oncology gynecologists about doing this with my j-pouch doc and they say it wouldn't happen. Apparently there is some law about a doc who is certified to do robotic surgery (as my gynos are) and a doc who isn't (my j-pouch doc) working together. If the robot is being used, everyone present must be legally able to use it. The specialists did not tell me this, my regular gynecologist did. The reason I'm going to an oncological gynecologist is that there is a small (as in less than 3%) chance this is cancer. Everyone says if it is ovarian cancer, your first chance to get rid of it is the best one and that it is not prudent to take chances once you are opened up. I don't think it's cancer, I've had it since my j-pouch surgeries and probably longer, it's just been monitored recently and it is growing. There's a chance it has been growing and receding off and on for years, but no one knows.I have no pain, it does not physically bother me.