Now we wait

January 7, 2011

"So you're ready for the revision surgery Abby?" Dr. T asked. "I'm not going to lie to you, it's going to be difficult. It's an extremely complicated surgery. I would like you to go to the Mayo Clinic in Rochester to have it done. What you need is a team that can follow you for life, because you are going to need lifelong care, and none of those doctors are going anywhere. If you were my sister, that's where I would want you to go." She went on to describe that Mayo has diagnostic equipment that she doesn't have access to here. She told me about the specific surgeon she wanted me to see and said she had already consulted with him about my case and that she would be calling him again this weekend to talk more. She told me the name of one of the world's leading doctors on pouchitis (which I have had) who is at the Mayo. She said they have an excellent GI team and a whole team of ostomy nurses who know their stuff. They have done more j-pouch surgeries than anywhere else. She did her residency there and knows the teams personally which is a bonus.

Relief at her level of concern for me brought me to tears and I sobbed, "Thank you." We talked about the possible complications, incontinence being one of the scarier ones for me. We talked about the possibility of ending up with a permanent ostomy and how one of the surgeons at Mayo would probably try to convince me to choose that route without even trying the revision surgery. "Of course I don't want to end up with a permanent ostomy, but if it happens, I'm prepared for it. People live healthy, active lives with ostomies. I just want to be healthy," I said. She said that was a good place to be mentally going into the surgery.

Mayo is out of network for my insurance. Dr. T said she didn't think she would have any problems getting approval for it though. "I'd be surprised if I even had to talk to your insurance company," she said as she wrote on the referral form Extremely complicated surgery. Refer to Mayo Clinic.

Dr. T told me Mayo would call me with an appointment time. At that appointment I would meet with the surgeon. They would do some tests (probably a pouchogram) that day and then most likely would do the surgery the very next day. For sure they will remove the remainder of my rectum. Whatever other revisions they do or if they need to make a whole new pouch will be determined upon the results of the tests they do. She said typically people are hospitalized for five to seven days after the surgery, but it may be a little longer for me. I was hospitalized for 13 days after my original j-pouch was created as I had a few complications. She said they like you to stay around the area for a while before flying back home after the surgery too, though I wasn't completely sure what that timeline would look like and I'm sure will depend on how I'm feeling and if there are complications or not.

I will have a temporary/diverted ostomy after the surgery so the area can heal. I asked if the quality of my temporary ostomy would be better because I had so many problems with the previous one. She practically scoffed when she told me it would be better quality. After about three months, if all goes well, the ostomy can be taken down. She said she could do the takedown surgery for me, but she would prefer I have the same surgeon do it so that I have that continuity of care. She said she would want me to have my annual scoping done at the Mayo too.

She spent plenty of time talking about the possible complications. "You understand the rectal sphincter is going to be traumatized again, which compromises it?" Yes. I told her I understood. I showed her the research articles I had read. She seemed to get excited as she looked at the articles because she personally knew the surgeons who had written one of them.

She asked us about plans to get pregnant. We told her we had none. She said chances of getting pregnant the old-fashioned way decrease with each surgery. She said she would want me to talk with a fertility specialist anyway while we were at Mayo.

After talking about all the risks, Dr. T told me the surgeon she wants me to see would be much more optimistic about things. All that being said, she said she was glad I'm doing this and thinks it's a good choice.

I'm still processing everything we talked about. But I'm ready. And so now we wait to hear from the Mayo.