Posted 3/31/2016 3:54 PM (GMT -6)
Hi, welcome to the forum! You are welcome here with your questions - fistulae, abscesses, and setons are more commonly found in Crohn's, but that's not a prerequisite. People often find their way here just like you.
So the hole that your surgeon cut basically turned your abscess into a fistula, which is a bit like a tunnel. Another way to think of it is like a pierced ear, and the seton like an earring that threads through the little tunnel. The reason why the seton is best is because if your abscess were to close up on the outside but not the inside, then it would just keep filling up with infection and burst open. So yes, you basically have a fistula.
I have a recto-vaginal fistula from Crohn's disease. I've had a seton placed in it two different times, but never a cutting one. Now, we just leave it open and alone. It really is a lot like a pierced ear - the skin is all healed around it, but it hasn't healed together.
Surgeons will typically treat a Crohn's fistula differently from one that just happens. Crohn's causes it's own complications, and it is very difficult to get them to heal. From what I understand, cutting setons are quite painful. Especially down in that area.
I think it is extremely important that you find a colo-rectal surgeon, which is a surgeon who specializes in the colon and rectum. General surgeons don't quite have all of the knowledge and experience to deal with these. In fact, my general surgeon told me one time that if I ever had another general surgeon tell me that he could handle my fistula and other Crohn's problems and that I didn't need a CR surgeon, then I needed to run away fast from that surgeon and not look back.
Sitz baths will be one of the best ways to help ease the pain. I do and don't use epsom salts, just depending on if I want to go get them or not. I'd give it a try both ways and see if using salts helps any better than just plain water. Everyone is a bit different.
I truly get how humiliating this must feel, especially with regards to intimacy. It is very sweet of your husband to care about you like that. I felt the same way you are feeling when I got my second abscess. It was peri-anal, they cut and drained it, and I had this gaping wound on my bottom next to the anal and vaginal openings. I had to pack it each day, but I couldn't reach, so my husband had to do it for me. It felt so humiliating having to lay there on the floor with my husband packing this wound on my butt. It made me feel like I was getting a diaper changed or something. I know you worry that he will view you differently, but it sounds like he truly loves you and the way his view of you changes isn't like how you're thinking. At least, for my husband it was more like he loved me even more because he was serving me. Not sure if that makes sense or not. It was one of the ultimate expressions of his love for me, to serve me when I was weakest, and it made him love me all the more for it.
As for intimacy, as long as you aren't in pain, you really should be fine. The only times I've had to stop intimacy for my RV fistula and seton stuff is if I was hurting too badly, or when we took the first seton out as an experiment to see if the Crohn's medications would close it. Oh, and after I did the plug surgery as well. But I've had this fistula for almost four years now, and I don't even know it's there most of the time. My husband said that having the seton put in didn't change how intimacy felt for him. He just followed my lead on if I was in pain or something.