I'm just over a year from my take down and have developed an abcess between my pouch and my l5/s1 vertebrae. To treat it my doctor put me on invanz for three months through a pic line. It had no effect on the abcess. My surgeon says that neuro surgery doesn't want to biopsy or drain it because of the location but he won't refer me to them to talk to them myself. It seems like he's only leaving me with one choice and that's to remove my pouch and have a permanent ostomy which I really don't want. Has anyone else had similar situations? Any advice on what to do next would be much appreciated.
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Well, you could get a copy of your imaging studies and make an appointment with the neurosurgeon of your choice. You might get the same answer (or not), but it might also be a much better experience.
Thanks Scott. You don't have to have a referral? I just don't want to leave any stone unturned.
Your insurance might require a referral to pay for the consultation (some do, some don't). If you need a referral your primary care doc might provide one.
if your pouch is leaking then drainage alone will only help if the leak closes up on its own. Some leKs can be repaired. For that you could consider a different colo-rectal surgeon, if your current one believes his handiwork is beyond his skill to fix.
Has your surgeon said whether there's an active leak?
I'll be sure to check with my insurance company ASAP then. I have a contrast test on Thursday so hopefully that will bring some good news. It was only a few months after take down that he had to go in and make a first repair.
Pouch removal should be a last resort. If a leak caused the abcess, a pouch reconstruction should be considered, and it does not seem that your current surgeon is capable of doing it. You may then want to go to either the Mayo Clinic or Cleveland Clinic for that surgery. If your j pouch cannot be saved, there are two procedures that do not require going on the bag: the k pouch and the BCIR. But you are not at that decision point now. Let us know how your contrast test turns out.
Thanks for the reply billy. I didn't even know those two other procedures existed and I definitely will post updates.
This is not all that unusual. I had a presacral abscess and it was drained by an interventional radiologist, through the butt cheek, and that was over 20 years ago. The drain was left in place for about a month. No need for neurosurgery. Yours is a little higher, but in the same general area. There are a lot of layers between your pouch and the actual spinal column.
I would get a second opinion from a different GI surgeon or interventional radiologist. You are entitled to one with even HMOs.
Jan 
So I got the contrast done and they didn't see any leaks. I went to get a second opinion and they did their own mri on me. Now I'm just waiting for their call for results and their next step.