HealingWell
Search Close Search
☰

Failed fistula surgery - what next? Please help

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/30/2018 9:59 PM (GMT 0)
Hey all,

I've had a perianal fistula for about a year. I've had an advancement flap operation, which closed one internal opening but didn't close another, which was found on an MRI. After that, I had a draining seton followed by another advancement flap. I'm 6 weeks into recovery from that operation and it's definitely failed. I am getting the same pain and drainage post bowel movement. I went for a couple of weeks with little to no drainage but everything is back to square one now, perhaps with the pain even worse (with my draining seton I'd get pain and drainage for a few hours after a bowel movement but then it would subside, whereas now it hurts for a few hours then feels uncomfortable most of the day.

My question is this, where do I go from here? I read studies that suggest a follow up advancement flap after a failed one is often successful, yet people also just seem to exist with a draining seton forever. I don't have chrons but my fistula is high up.

I'm feeling really low and despondent. My CRS hasn't talked about a cutting seton or a LIFT. He is a very renowned CRS in this country.

Has anyone got rid of their fistula after multiple surgeries? So long as the surgeries are done well, does the inside of your rectum hold up to multiple operations? Or is there a limit they can do before possible incontinence becomes an issue?

I am so fearful of having to live with this forever with pain and just be seeping pus all day, every day.

Post Edited (dbrookenz) : 10/30/2018 4:15:50 PM (GMT-6)

Posted 2/13/2019 9:26 AM (GMT 0)
I know this is several months old at this point, but I'm going through similar problems. How are you feeling these days? Has your problem gotten any better? I hope for your sake it has!!

I had a hemmerhoidectomy back in Aug 2018 that developed an infection post op. As a result of that, a fistula formed and I've been dealing with that ever since.

It sounds very similar to yours. Mine will swell up a bit with some puss/ blood but as soon as it's relieved, the pain subsides. Just a never ending cycle of that really since about September of 2018 for me so far...

I had a fistulotomy done by the same surgeon who did the hemmerhoidectomy and it didn't work. about 3 weeks later I felt the familiar feeling and I was completely back to square 1, almost worse really. I have terrible american health insurance, so I was stuck with the original doctor through all of this (she was very nice but also a general surgeon and not a specialist) until I convinced her to refer me out, which they finally did.

I saw the colorectal specialist about 2 weeks ago and after a very painful exam with the ano-scope, he booked me for another fistulotomy, which is happening tomorrow (well technically today at this point). He thinks he can just make the wound larger and that it will work this time. I'm obviously pessimistic but he's the only specialist I've got so I kind of have to go with what I'm told. He said that if he gets in there and its become much more complicated, he would potentially do a draining seton.

The whole experience as I'm sure you know is hell on earth. It's been one of the most mentally, physically, emotionally and financially draining things I've ever gone through and I'm so ready for the nightmare to be over. Hopefully tomorrow is my lucky day!
Posted 2/13/2019 9:55 PM (GMT 0)
Hi PITA123,

Firstly, let me say that I have great sympathy for your situation. I've been battling for fistula for two years. Since I posted the above, I've had another draining seton inserted. This has helped a little bit with pain and drainage management, but I still get that cycle of pain / swelling post bowel movement, followed by an easing throughout the day. Sometimes the pain is quite throbby and tough, other times it's minimal and subsides quickly. The drainage isn't huge, but enough to wear a pad for the day.

I have another operation due on Monday. It's for another advancement flap or a LIFT. My specialist told me before my last seton insertion that he wasn't sure why my original flap operation failed, but that he had another person with my issue take multiple surgeries (and years) before he was cured. I think they're just trying options one after the other, hoping for the best, and if it doesn't work they just try another.

The good news is that these things rarely stick around if you're not a chrons patient. They just take a lot of time and energy. I know exactly what you mean about the toll it takes. That nagging pain almost every day means I don't have the same motivation or lust for life I once had, and the fact it's coming from your anus area means it kind of takes over your entire body in a way. it's not like a sore hand or something.

Please let me know how your surgery today goes. I was very despondent after my last posting here, but I feel a bit more zen about it all right now. I know I'll beat this, whether it takes one more surgery or three more. The fight continues!

Good luck my friend!
✚ New Topic ✚ Reply