For those researching fistulas right now...

This thread is for those who may be researching "fistulas" now, because they suspect they have one. I was once in your shoes. I remember it well. I was lying in my bed, unable to sleep because my wound on my bottom, where I had had surgery months before to drain a perinatal abscess, was not healing. I was seeing physicians, and none of them were saying fistula, they were saying "let's just give it a little while longer to see if it heals."

So there I was, at 3am, researching what could be causing it. When I first read about fistulas and setons and people having this for years, I'll admit that I freaked out, and cried. I had completely overlooked all the encouraging words and positive things people were putting on here; I just focused on the negative. I was dating the love of my life; I wanted to get married; I had planned to have kids one day. I felt like that was all going to go away. Not to mention, how could I afford this??

Well, I'm here to say don't freak out. I was diagnosed not long after I had done my research. I've had dr. appts, and surgeries, and setons, and I've had my seton for about 3 1/2 years now. And guess what? It's not as bad as I had made it out to be when first researching it. Today, I'm happily married (to the man I was dating back then!), no kids of our own as of yet, but we have spoken to my colorectal surgeon who told is that one of his patients with eight setons had recently given birth!

So if you are researching and reading about fistulas, know that we are here for you. No, you will not have all good days, and you will have to do a little more maintenance, but you adapt and adjust. Heck I don't even notice mine most of the time! Please read all the encouraging words on here and know that you are not alone, and most importantly know that you will be fine!

Hi Ladies,

I have a seton in via my bottom and vaginal area. I have had it now since March 2014 due to a vaginal abscess that tunneled to fistula in rectum. I have been reading your experiences with setons and haven't seen much about surgeries taking place but having the setons in for very long periods of time... I have been told I need surgery and have been dealing with a colorectal surgeon. I also have a stricture in my colon that I'm told is creating the fistulas and abscesses I've been getting for the past year and half and that to stop getting those two things I need to have this stricture surgically removed. Has anyone else with seton been told they need surgery? I'm finding this difficult also with my relationship... I am not comfortable with intercourse or anything intimate with the seton in place... probably my own insecurities :/ How do you ladies out there deal with your "sex lives" and be comfortable with it? I have heard of the plugs used for fistulas... that hasn't been an option brought to me, does anyone know what would qualify to get that done? I really don't want to have surgery but at this point that's really the only option I have been given.
Any words of advice or info is greatly appreciated :)
Stay well.

Hey kmp,

I have seen three different colorectal surgeons in three different states, and between the three there are four options, ALL of them viable.

1) leave the seton in forever. This is actually the easiest option. I know it causes discomfort and embarrassment about intimacy (and I will mention that in a minute), but surgery can be hard on your body.

2) take out the seton, start Remicade or a similar biologic and hope it heals. The problem with this is that if it closes on one side, then it will create an abscess and burst through again, re-creating the fistula.

3) plug surgery. This is just how it sounds: tissue is taken from another part of the body, stuffed into the fistula, and they hope that it absorbs and heals it into the fistula (if that makes sense). If this doesn't work and it just falls out before attaching and the fistula recurs, you can always put the seton back in (or start biologics and hope it heals evenly and not just on one side). This is the one that I am trying next month.

4) flap surgery. This is where they take a flap of skin from somewhere and actually cover the fistula (either on one or both sides), like a patch over it. This is the most risky and I am really hesitant to do it, personally. If it doesn't work, you can't really put the seton back in because there is still the flap there. It's rare that this heals and works on its own; you usually have to do a temporary ileostomy (and have a bag) for about six weeks, then they can reattach it. But if there is ANY inflammation at all, they aren't allowed to reattach. So if you flare, even the tiniest bit, no reattachment for a while. The tricky part with this is that having the ileostomy itself will cause inflammation because it's not natural, and obviously they can't tell the difference between Crohn's inflammation or just natural inflammation, so they just won't reattach. You run the risk of having a bag for a long time. All three surgeons said the odds are 50/50.

As for intimacy, I didn't get the fistula until a few months after I was married (and I actually waited until I was married). But my husband has been extremely patient, kind, and understanding throughout the entire thing. If I have to stop because it hurts a bit because of a bad angle, or the knot got caught up inside me, he is completely understanding and has not complained once. So I have been so blessed this way. If you are with someone that loves you and that you trust, then trust in them. Be open about your fears and insecurities so that you can be reassured.

Would anyone with a fistula out there tell me how your Surgeon found it?? MRI, catscan??? I am due to have an MRI of pelvis with and without contrast this week. Hope to hear from you..