Hi Gin Lyn,

I had the pouch advancement surgery to repair a fistula about two years ago. The surgery wasn't fun but it was the last resort after several other, less complicated, surgeries failed. There were some complications and I ended up having two emergency surgeries in 24 hours (so I'm told, I don't remember any of it) and was in ICU for five days. Please understand that I am not trying to scare you or steer you away from undergoing this surgery. I have had over 17 surgeries for my Chron's and am definitely one of the more severe cases my doctor has seen.

That being said, I would do it all over again if I had to. I was absolutely miserable with the fistula and despite the complications the surgery was a success. Not sure if the doctor has mentioned it to you but a blood transfusion is pretty standard with this surgery. I had no issue with that aspect but wanted you to be aware that a transfusion is probably going to be needed.

I have been to a support group for people with UC/Chron's and a couple people in the group have had the flap advancement surgery as well. Their stories are much milder than mine. While it is a big surgery, it was a success for each of them and they too said they would do it again if needed.

Good luch with whatever decision you make.

My Cleveland Clinic surgeon also recommended a pouch "redo" - I don't know if it's the same thing as an advancement - for my PV fistula, which sounds similar to yours (low).

She said, however, there was no guarantee that the fistula would be taken care of with this approach. However, it sounded like there was a more likely chance of a redo working than any of the other options I was given - which she rated at a 0 - 10% chance of success, other than pouch removal.

I'm still sitting on the fence because a) I'm not suffering from constant infections as you are and am tolerating the seton relatively well; and b) I have the fear this big surgery won't kill off the fistula and I'll eventually end up going the removal route and losing more intestine than I want to.

So ... not really experience to share, at this point, but to let you know my surgeon has a similar point of view as does yours, and I feel for you going through this ordeal...

Thank you both for your replies! Yes, it is a difficult surgery and, I've heard, quite painful, but I really can't live with this stupid fistula much longer. The constant infections and pain -- not to mention that I am now losing up to half a liter of liquid at a time! -- is making it not possible to live with at all. My poor kids are so used to Mommy being sick and tired all the time that when I really am up and around and doing things they go into semi-shock and don't know what to do with me!!

I really think this is the way I'm leaning now. I know it's a last-ditch effort, but I am hopeful that perhaps it will be the last...

Thanks again,
Gin