Third Opinion

I had an appointment at Lahey Clinic in Burlington, MA in January. Last week, they called and asked if I could come in today. Perfect timing.

I saw my surgeon last week after I went to Boston. He did not recommend doing the gracilis flap surgery. He said he would CONSIDER it for a last option. He said that he would a similar surgery to the first one he did but he would go up through my vagina and try that way. My surgeon said that he was very interested in what the female surgeon at Lahey Clinic was going to say-he values her opinion greatly.

The female surgeon I met with was very nice. She had a great personality. She said she knew my surgeon and his partners and that she had respect for them and thought highly of them and their work. She went straight to work. She said she already read my chart and looked at my pouch studies. She asked me a few questions and said that she wanted to do an exam herself and see the fistula on camera.

I went into the exam room and the next 10 minutes were horrible. I won't give details but fingers and scopes were going in places I didn't want them to. It was very painful and uncomfortable but I knew it had to be done. After the exam, she spoke with my parents and I about her findings and options for surgery.

She said that she would recommend doing a trans-perineum repair of the rectovaginal fistula. It's hard to explain but she wouldn't enter through the anus or vagina. She would make an incision right on top of the fistula and repair it that way somehow. She said a 1-2 day hospital stay and about 4-6 week recovery. (Not bad). She continued to explain and draw a picture of it. It's hard to explain for others to understand. She was worried that if they did the surgery through the vagina that it would cause scar tissue and issues with sex and pregnancy later on in life. 

She said that this surgery is about a 75% success rate. She said that she would send my surgeon the paperwork and call him to discuss it. She seemed very confident in this surgery and that it would work. Of course, there is a chance it wouldn't. It was nice to hear a female perspective on these surgeries. I called my surgeon and made an appointment to see him after New Years so that we can talk about the next move and see if he does these surgeries often. 

Happy Holidays!

Second Opinion

I went to Boston on Thursday to check out a surgeon at the Brigham and Women's Hospital. He specializes in colorectal surgeries. Other than waiting an hour to see him, the appointment went very well.

He is very friendly and sociable. He read through my thick files and came to the conclusion that he wouldn't have done anything different than what my surgeon here did. That was reassuring to hear. He was able to explain everything I already had done in a way I could better understand.

There was not one thing that he would have done differently to repair the fistula. If I decided to go to him for the next surgery, he explained how he would do it. Or how the plastic surgeon would do it.

He would do a gracilis flap which requires a plastic surgeon to pretty much do the whole surgery. This is where they take muscle from my upper leg and stick it between my anus and vagina to heal the fistula that way. He did an exam on me and felt where the fistula was and agreed that it is pretty small.

He said that the plastic surgeons do one of these surgeries at least once a week if not more. They mostly do it for people who have colon cancer, but it is the same procedure.

He stated that this surgery was about 75% chance that it would work and heal the fistula. If for some reason it didn't work then they could possibly try again later on or I would have to consider having the ileostomy permanent. Not that I want to think about that right now, but it was good to hear all the options and possibilities.

There are some risks associated with doing a gracilis flap, as there is to any surgery. It is worth the risks for me. Now I meet with my surgeon here on Tuesday to see what his take on everything is and what he would do for a Plan B. I will mention what the surgeon in Boston said and figure out how many of these surgeries the plastic surgeons here do. That might be the answer to where I have my next surgery. I would ideally like to stay local but going to Boston is definitely something to consider.

Back to bad news...

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.