Where we stand now

May 14, 2009

So we had an appointment with Dr. T yesterday afternoon. Basically, I asked her if there really was nothing else that could be done other than surgery to fix the problem. She said we can keep doing the dilations, but she doesn't believe that they will provide a permanent solution to the problem. She said that in addition, there is a risk of perforation every time I have a dilation done, which is why she wants to be the only person who does the dilations on me.

She said she's willing to continue to do the dilations as long as I want, but that surgery will be the long-term solution. We talked about where the surgery would be done, what kind of stoma I would have, recovery time, etc. When we left, we decided that we will continue with weekly dilations (except she's gone this week and I'm gone next week), until around October sometime. Then in October we'll plan for the surgery. I'll have a temporary diverted ileostomy for two to three months, then Dr. T will be able to do the ileostomy takedown.

The surgery will remove the remainder of my rectum. That means that if I have the same problems with strictures again, I'll be able to do self-dilations every day if I need to. With my rectum gone I won't have any more UC in my body. That will be good as it will also significantly decrease my chances of cancer.

Dr. T thinks that pouchitis isn't an issue for me. I've had it once confirmed by a biopsy. We decided to go off the Cipro (which was treating pouchitis) and see what happens. She said that unfortunately, if I have pouchitis chronically, the surgery won't solve that problem. Antibiotics can treat the pouchitis, but if antibiotics stop working, then we would be looking at another surgery to create a new pouch, or the possibility of a permanent ileostomy. But that's not a problem that I'm worrying about right now. That's just one of those possibilities.

That's where we stand now. I'm still hopeful that the dilations will help. I'm not giving up hope yet. Jeremy said that he needs to think about the surgery as if it's what's going to happen. I understand that. We'll just have to balance each other out and be there for each other no matter what happens. Even if I have to have the surgery, I'll be okay. I know I will. I have to.