So my last blog was good news and now I'm writing about bad news. I was scheduled for my takedown surgery to get the bag removed for November 21st. I had a pouch study last Thursday to confirm that the fistula had been healed.
My dad went with me to my pouch study for support. I was very nervous but pretty confident and excited that surgery was coming up. I had already taken the time off work and figured everything out. Well, as I was getting the test done, I started to have pain and realized this shouldn't be happening. Then I feel the liquid come out of my vagina. Greaaaaat. I knew right then and there that the fistula had not healed. I confirmed with the radiologist and he said that there is still an opening. I began crying and couldn't hold it in. I couldn't believe it!!
I was a wreck for the remainder of the day. I cried a lot and kept to myself. My parents were just as disappointed as I was and tried their best to be there for me. I immediately called my surgeon but he was on vacation and the APRN was out with the flu. So now I had none of my doctors to talk to. That just made me more mad. I wasn't able to talk to anyone until today (Tuesday). The weekend sucked because it was all I could think about. I had it set in my mind that I would be bag free for Thanksgiving and now I wasn't going to be.
So today I saw my surgeon. I left work early to meet with him. My parents met me there. My surgeon didn't have a chance to compare x-rays so he wasn't sure if it was the same fistula or a different one. He assumed it was the original one though. He was just as shocked as we were. He said that he and his partner were very confident when they did the repair surgery and he assumed it would have been healed and everything would work out. He said that it is too early to do another surgery because the tissue hasn't healed yet. He recommended that I come back in about a month to schedule another pouch test to see if it healed over time or see if we need to do another surgery.
When they repaired the fistula this time, they went up through my anus. He said that if they have to do another surgery, they might decide to go through my vagina and repair it that way and maybe have a plastic surgeon come in to move muscle around to help repair it as well. He said we would talk more about that when the time came.
My dad let him know that we were seeing a surgeon in Boston for a second opinion. My surgeon thought that was a good idea and recommended it. He said if he was in our situation, he would do the same thing. He genuinely felt sorry that this was happening to me and that there would be a solution soon. He gave us another surgeon in Boston that he recommended. He gave me her phone number to call and make an appointment.
It was nice to have the help from the surgeon and to know that he was cooperative in having second opinions. It made me feel good that he was on the same page as us and that he was willing to help in any way that he could. I am very confident in my surgeon and I don't blame him for the bump in the road. I just want answers. I mean, we all knew that this wasn't a 100% guarantee that it would heal. We were just very confident that it would because it is such a small opening.
So as of now, I just need to call the surgeon he recommended and make an appointment for the same day as the other one in Boston or at least the day after. Here is where I continue my waiting game. There is still light at the end of the tunnel, it's just a very long and windy tunnel.
