It's been a couple years since the last update, but since I've found this thread so helpful, I wanted to share my story and hopefully receive updates from you guys.
My story first began about 10 years ago. While at college (I blame dining hall food and cheap toilet paper) I developed a fistula without an external opening. After about 2 years of denial, while dealing with discharge and pain, I finally went to a colorectal surgeon and had a fistulotomy to repair it. It seemed to work, and for two or three years, I was pain free.
Then I started to develop some chronic pain in the area of my tailbone. I saw several doctors and had X-rays be the consensus was that I may have a tailbone dislocation. Unfortunately, there weren't many treatment options available. Fast forward a few more years. The pain got worse and worse, but I didn't think I had any treatment options available. Finally, this year, I decided I couldn't live with the pain anymore, so I saw a spinal specialist who sent me for an MRI. His conclusion? I had a massive fistula extending all the way to my tailbone. The pain I felt was fluid build up and pressure. There was additional fluid along my spinal column that wasn't draining because of the fistula. Time to head back to the colorectal surgeon.
It looked like the same fistula from my youth was back with a vengence. My surgeon performed an exam under anastesia, but ultimately referred me to another surgeon who specialized in the mucosal advancement flap procedure.
So, since there was no external opening, first step was Seton placement. That was fairly straightforward. A bit painful at the incision site, but after a couple days I was back to work. After almost two months with the Seton, with continued drainage, I accidentally broke the Seton and pulled it out, along with a couple internal stitches. Luckily, my surgeon said that since the drain had been in so long, it should remain open without the Seton and everything would be okay.
End of June I had the advancement flap. I definitely underestimated how much pain and disconfort I would be in. It took a solid two weeks before I was mainly pain free. However, 6 days after my surgery I began having extremely heavy bleeding following a bowel movement. The bleeding wouldn't stop, and eventually I could no longer even stand up to go to the bathroom. I was way too lightheaded. I ended up in the Emergency Room, with a blood pressure of 84/52 and was rushed to the trauma room to receive a couple large bore IVs and other treatment to stabilize me. I had lost a lot of blood and my hemoglobin level dropped from a 14 to a 9.3. Yikes.
However, somehow, it seemed like throughout all this, my flap held. By the time I was discharged two days later, drainage had dropped to almost nothing. Amazing! Since then, it has resumed as I've tried to walk a bit and be more active, but right now, at almost three weeks since the surgery, I'm still lying low and trying to stay off my feet as much as possible. The pain has mostly subsided and I'm thinking about going back to work part time, light duty, later this week. Now it's just a waiting game. Is this thing actually going to work?? It's been so long and I feel like I've invested so much time and hope into this surgery.
As I've said, the stories on here have been really reassuring. Im going to continue taking it easy and give myself the best chance of healing, but I've heard that I really won't know if this worked for another two months! Let's hope for the best!