Fistula advancement flap surgery

Hey guys,

I am wondering if anyone can offer some stories or advice on my current situation using their own experiences.
I have a fistula that comes out of my butt cheek about an inch or so from my rectum. I saw a colorectal surgeon who put it a seton that was left in there for 8 weeks and then he tried the plug surgery. Unfortunately after 7 weeks on my third post op check up he said it hadn't worked and now he will try the flap surgery. I have had to wait almost 6 weeks from being told it had failed to having my next surgery and it's not been a fun ride.

Most recently the pain that I have is excruciating especially after having a BM. about 3 minutes after pure fecal matter comes through the fistula and out of my wound. I cannot describe the agony this causes. It feels like someone is pouring acid over my body. I scream in pain and wonder when this will ever end. My wound sometimes tries to heal over and then eventually almost bursts again the pain is unbearable.

I am dreading my surgery, the pain pre and post op and whether it will work or not as this is unbearable, i can't live my life like this anymore.
I have to do an enema but I am so worried because every time I have a BM I have extreme pain because it comes through the fistula.

I guess what I am truly after is finding out if anyone had has this surgery and it has been worth the wait and the pain because it has worked. I know we shouldn't read the internet but I don't know anyone who has had this, I had never even heard of it until I got it.
No Crohns or IBS.

Please help me keep postive, im finding this extremely difficult right now :crying:

Oh wow! Very best of luck to You!! I hope all goes well.
Maybe when you are able to you can tell me more about your story if you would like to share.

Hey Scifi, Thank you for your kind words. It's amazing how alone you can feel going through this. I'm tired of being in my bathroom with no one around crying asking the walls to help me. Literally saying out loud to no one "please someone help me"
I was in pain with the seton but I have read a few people have had this for a while and it's no longer an issue. I just want to go back to "normal"
When you don't dread waking up in the morning. I feel terrible complaining because there are many people that have it much worse than me but i can truthfully say what a corker for my first ever illness. I hadn't had surgery, broken a bone or anything then this happened. Now I am onto my 4th surgery and praying this some day ends.

I Would love to join a gym and go swimming but no can do. I see other people going to work and i think to myself its a good job i dont have my work permit because I wouldn't be able to anyway.

It's been difficult, newly wed and living in a foreign country away from my family. My wife has been great but its still super scary and traumatic.

Thanks for listening to me rant lol

I've been in fistula hell for 14 months. I'm waiting for someone to try a LIFT. All they seem to do in Canada is I & D's. I've had 7or 8. Failed setons.......I've read that a FLAP is more successful if they do it in conjunction with a plug. But I think everyone just grasps at straws with these things.

Hi, I swam on the beach with my seton - it was a clean beach in the Greek islands though!
I wouldn't swim in a public pool though, both out of respect for others as well as the potential danger to get it infected.

My surgeon said it was totally fine to swim with a seton in, and I did multiple times. (And yes, in a swimming pool.) However, I think I would wait until most drainage has stopped before doing that.

I had the flap surgery Aug 1 and so far so good. Pain lasted about 3 days. Only took pain meds the day of and day after. Lots of sitz baths helped. As well as lots of rest. I have another exam in December but I can already tell the draining has lessened. There is hope. My surgeon luckily is AMAZING.

Guys, what meds are you all on? I ask because I too just had an abscess drain/horseshoe seton put in and I'm really planning on this thing being out soon (like a month or two tops - fingers crossed). I am exactly 2 weeks out and still having a lot of draining and some pain and I meet with my doc for follow-up in a week. I know she's going to recommend Remicade (currently only on Pentasa) and I'm going to be fine with just about anything if it means healing.

I just need to mentally prepare myself if you guys are on biologics but still need the seton.

Gypsy, i'm sorry you're in pain I would say I can only imagine but next week I will be feeling the same thing no doubt. I really hope that this surgery is it for you. What is the drainage that you are getting?

The only time at the moment my wound really hurts is after a BM or if i am gassy and the air escapes from places it shouldn't. I am dreading after surgery but hopefully they will give me something to keep the pain manageable. They give me percocet but I would say that doesn't do anything for pain really just makes me feel rather sleepy. Lately when taking percocet It has made me feel very nauseated and makes me itch so i am guessing I now have an allergy to this too. I had none that I was aware of before this and now all doctors hate me because I'm allergic to vacomyacin. Pfffttt lol

Thanks for coming back and letting us know how you got on

I dealt with a similar situation, with a larger fistula that would pass stool (and often had particles get stuck in it). Sadly, my first advancement flap surgery failed (I knew fairly early on but we held out hope for secondary healing).

I have since had a temporary (hopefully) ileostomy and opted for a gracilis muscle flap, which seems to have mostly done the trick (nearly fully closed).

On the prep, enemas were always hard as I would leak immediately and had a harder time holding it in. I'd perhaps treat the area around with hemorrhoid cream or similar before you start and now that once your colon is mostly cleared (which happens quickly) you will just have to deal with liquid passing.

Best of luck...and rest up up and stay positive!