Pregnant with fistula

I think that you should have the seton put it. I have a recto-vaginal fistula and have had two babies with it. The risk of the fistula isn't the drainage being gross, or even the pain. It's the fistula closing on one side, forming an abscess, and then you have a nasty infection that could cause sepsis. Happened to me shortly after having my first kid. I almost died from it. As for how painful it is, that just depends entirely on location (how close to nerves and sphincter muscles it is), as well as how complex it is. But I strongly recommend doing the seton surgery. Setons can be long-term and can be in indefinitely, so as you're running around with a kid, you can still have it in and not have the surgery for as long as you need.

I'm almost 34 weeks with a perianal fistula.
My fistula will be 8 years old in August and I've never had a seton. I'm not sure if I'm even eligible for one because no one has ever offered to put one in.
I don't know if it's worth getting a seton in right now, but I just want to make sure that you are getting a csection. I don't know if any surgeon or GI has told you, but your perianal area is already damaged and it's just crazy to risk more tearing, abscessing, and fistulizing of that area.
Has your fistula ever closed up and reabscessed before?
My abscess only ruptured once and created a fistula; my fistula closed up temporarily thanks to remicade, but I've never had a second rupture, so maybe that's why no one ever pushed a seton.

Oh yes, so glad they mentioned a c-section!! You definitely need to meet with the OB and stay away from a midwife. Midwives are WONDERFUL, but by nature their focus is more natural birth, etc. Which is awesome when you don't have high-risk medical conditions that necessitate a c-section. And even some OBs. With my first, we moved to a new state about two months before she was born. In the old state, the OB, my GI, my CR surgeon, basically everyone stressed the need for a c-section. And in the new state, I walked into the CR surgeon's office, and before he even said hello, he said looked at my very pregnant belly and said, "I read your record transfer...you're having a c-section." It wasn't even a question. Then I met the OB and she kept insisting I could still try vaginal birth. So three weeks before my c-section, I fired her and got a new OB that I never even actually met until the day of, lol.

You will want to schedule the c-section at about 39 weeks, or maybe sooner. Even though first pregnancies tend to have longer labor, you want to be having the c-section BEFORE you start labor so if things progress fast, you don't risk an emergency c-section or even getting there too late for one. If you were to tear, you honestly might not be ever to able heal. NOT trying to scare you, just trying to help you feel firm enough in the decision to stand up to the OB if they say you don't need a c-section.

I totally get it - that pain and swelling of a re-abscess hurts a lot. And if it bursts on the inside instead of the outside to drain, you could go septic. That's what happened to me about 4 months post-partum, and I almost died. Like, the doctors were telling my husband to have my parents and anyone else fly down and come say goodbye. It was bad. I think that the seton surgery is definitely the way you should go. It's just so much safer. It will hurt for a bit, because duh, it's surgery lol. But it's much better to have the seton pain now than abscess pain (and possible infection) later.

Sorry, I'm lecturing. I'll stop now. ;)

You DEFINITELY need a new OB then. My regular surgeon (he took out my gallbladder) once told me that he wouldn't touch me with a 10 foot pole when I asked if he would do my fistula surgery, and that if any other surgeon told me that a fistula was a simple surgery, etc. then I needed to RUN away and not look back. I think it's the same with this OB. If she is hesitating on a c-section and admits to no experience with a fistula during pregnancy, she is NOT a good fit for you.

I would ask your CR surgeon for a recommendation for an OB he would feel comfortable having you see. I usually ask my specialists for help with my more "regular" doctors because they know which PCP, OB, etc. will have more experience in their field as well.

So the sepsis was from an abscess that never actually fistulized. I woke up one morning to a large lump. This was about two years after I had had my first abscess-turned-fistula that had a seton in it at the time. It was a Friday and I couldn't get in to my GI or CR surgeon, so I saw my brand new PCP. He insisted that since I didn't have a fever, it was just a swollen gland. I reminded him that two weeks before he had seen me with freaking INFLUENZA and I didn't have a fever - Remicade infusions will do that to you. Anyway, he sent me home and by that night it hurt so bad I could barely walk. I went to the ER the next morning and the ER doctor immediately called a surgeon and they sent me in for surgery to cut and drain it, but it was too late and it had burst on the inside and I was septic - I developed a very high fever a few hours after the surgery and had to get 5 different IV antibiotics through 3 different IVs going at once. But we packed it really, really well and continued packing it every day for probably a month so that it would heal from the inside out and never turn into a fistula, thank goodness.

As to the pain, it really, really depends on where yours is located. My first seton surgery was barely noticeable, but when we put it in again (we tried taking it out to heal, but I kept flaring and getting c. diff. so it couldn't heal), it had branched a little bit and was going through the sphincter muscle right by some nerves. It felt like I had a sharp stick being jabbed up my bottom for maybe a week, but no longer than that. The only time it gave me tons of pain was when we actually tried to repair it with a plug, but it was just too close to the nerves and the sphincter kept spasming, so it was excruciatingly painful. But that's definitely the exception, not the rule.

I totally get it, good luck! Please keep us updated and let us know how it all goes!