My first fistula

Remicade is supposed to be pretty effective with closing fistulas. If not, then a draining seton is what I have for my RV fistula and it works great.

I understand exactly how you're feeling.

If it helps...so far my first fistula was my only fistula.  I do stay on my maintenance meds though.

Mine was not rectovaginal (and I am thankful for that), but perianal.  I took the flagyl and it was doing great work at closing the fistula.  Unfortunately, I am one of the group that has neuro side effects and had to stop taking it.  They tried cipro, but it wasn't doing anything for me (I have heard others have some success with it).

We next went with the seton.  I loved this option!  It meant I could avoid going to Remicaid possibly (I am a big fan of going to the next med only when all else has failed).  The seton is basically a ring that keeps the fistula open so it can drain and heal.  I picture the fistula as a U shaped tube, then the seton is a loop inside the ring that ties at each end of the tube.  Some folks keep the seton for a long time.  I had mine adjusted (tightened) as my fistula healed and closed.  It eventually fell out as the U healed closed.  I worked 40-60 hour weeks at a desk job and traveling for work while I had mine.  The first couple of weeks, I was tender, but after that I kept soaking and only had intermittent light pain.  I was told the amount of muscle involvement makes a big difference so you could ask that.  i never did go to Remicaid, but I will consider it if I get a second fistula (knocking wood here).

I really recommend warm sitz bathes before and after you get a seton.  It helps the ache and keeps you cleaner without irritation.  A gentle hand held shower is my favorite way to clean my areas of fissures.

Hope you get relief soon.

Hi.

I can empathize with the feeling gross and the pain. (Oh the pain!)
I'm trying to educate myself about fistula causes, types, treatments, etc.

I got my first fistula in February. It started as an abcess in my labia and perineum. Misdiagnosed as bartholin gland cysts at first. But it swelled and swelled grotesquely then eventually ruptured (in the car on the way to the OB/GYN appt. for it). Next stop was the hospital where they eventually did a fistulography and a CT scan which the CR said didn't clearly show the fistula path. The next day they did EUA (examination under anesthesia) and cleaned out the abcess and put in two setons - one for the original fistula opening and the other for an opening they made for a dead-end branch they found. What joy!

One of the setons is out now, but my CR had been non-committal about the other. I saw him this week and, AGAIN, pressed him for a solution. He said that I'll never get better. That was just too much to bear. He gave me three options: 1-change nothing and just deal with it, 2-go full-time with antibiotics, probably forever, or 3-get an ostomy.

I wasn't happy with those answers. I had done research before and felt there were other options out there that could be worth a shot. I recalled something about lasers. So, I started looking things up again. I'm compiling info as I go into a cloud-based document. You, or anyone else reading this, are welcome to look at it. It's at:

/docs.google.com/document/d/1QstAz5msjPpX6PJLwtg9UBFSdi4HQl0R0AgOu2DU8gU/edit?usp=sharing