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Failed Fistula surgery, what next?

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Crohn's Disease
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Posted 9/10/2017 6:42 AM (GMT 0)
Hi,

I've had a fistula for about 4 months after a drained perianal abscess wouldn't heal. It's a high fistula so I couldn't get a fistulotomy. I stead, five weeks ago, the specialist performed an advancement flap procedure. I'd had a draining Seton in for about 3 weeks prior to the operation but it fell out and was extremely uncomfortable.

Unfortunately I'm pretty sure the advancement flap has failed. My draining wound has not healed. It was 4.5cm after the op, now it's 3.5cm and drains. Some days drainage is very light but today it was the same as pre op. I also have a bit of drainage from my anus.

What options do I have now, going forward? Can I try the LIFT if I've had the flap already? Can they try flap again? I'm so scared that a permanent Seton is my only option. I don't want to spend my days with guaze packed between butt cheeks.

I'm really depressed the flap failed. I don't have Chrons disease. Does anyone have any advice or stories about success after failure? I'd really appreciate any advice.
Posted 9/10/2017 11:59 AM (GMT 0)
I never had the FLAP surgery, but I did have a "permanent" seton in for several years. After a bit, the fistula stopped really draining ever, so I stopped needing gauze or anything. It was almost like a piercing. Eventually, the skin around it healed and I had the seton removed. The fistula is still there, but it's even more like a piercing without the earring. Still there, but does absolutely nothing. Sometimes gas will escape through, and if I'm doing a colonoscopy prep the really runny diarrhea will leak through if I don't get to the bathroom in time, but there's no pain, no drainage, nothing. I barely notice it's there.

So I know it's not what you're looking for necessarily, but just some reassurance that even if you do end up needing a long-term seton, it's not always going to be as bad as it is at the beginning!
Posted 9/10/2017 11:18 PM (GMT 0)
Thank you for your reply, I really appreciate it. I could definitely live with what you describe!

For the last 6 months I've been hunting for a more permanent solution to this fistula but I'm starting to realize that may not exist. The seton drain I had for 3 weeks felt really uncomfortable in the hours after a bowel movement, like there was a pressure building and I'd get aches and feel dazed. Then that would subside after a few hours and I'd feel normal again. I did only have it in for 3 weeks though, perhaps not enough time to know. It also fell out and I don't think I did anything rough to dislodge it. I figured my body just wanted it out and did the rest.

Thanks again for your reply. I'm hoping that I can try the LIFT after my failed advancement flap but that might depend on whether they can operate on that region again after the flap op.
Posted 9/11/2017 4:17 PM (GMT 0)
Fingers crossed it all goes well!! Please keep me updated!
Posted 9/12/2017 12:16 AM (GMT 0)
I am a fellow flap failure case...it sucks.

I have since had a more invasive procedure using gracilis muscle from my thigh to address my largest fistula. Before I had the surgery, I did have an ileostomy put in place to allow the area to fully heal.

The good news is that the surgery has greatly improved that fistula; sadly, I developed another draining fistula after that (so I still have the ileo). I am going through a change in meds to see if I can get better control of things before entertaining a Martius flap to repair the new fistula (if it doesn't heal) or something more drastic.

Wishing you luck on your journey!
Posted 9/12/2017 7:07 PM (GMT 0)
Sorry to hear and sending my support Brookend.
In regards to the seton maybe it was not properly fitted the first time.
Medium term (a couple of months) it maybe a sensible solution. On occassion as SCIFI said it can be healing as well. So perhaps you can give it try again.
You can have the LIFT, Filac, VAAFT, so the options are there.
Most of these help the fistula to shorten as well.
The fistula loses in the end.
Posted 9/16/2017 3:27 AM (GMT 0)
Thanks Dimitri. I love that last lube, the fistula WILL lose in the end.

It's been 6 weeks sincey advanced flap op. My external wound has prettyuch healed over but there's still an approximate 3cm cavity. The nurses were packing it every other day but unfortunately I can't go every day due to work. I'm now resigned to getting another abscess at any time. I also get a throbbing, uncomfortable anus about an hour after a bowel movement. It lasts for a couple of hours and then settles. There's some yellowish discharge too. I've had a few aches in my arms and shoulders for the past week as well PLUS a weird shooting pain in my left buttock (doesn't feel like an abscess, more like a nerve or something. I ended up crying last night. An adult guy in his 30s reduced to tears. The advancment flap failed and the Seton I had prior to that was the worst pain, so much so that my body rejected it after 3 weeks. Just fell out!

I don't know where to go from here, what options I have. It's really destroying me. My life has become work and rest and barely anything else. Really tough when you're a single dad.

Hope things are going better at your end my friend.
Posted 9/16/2017 7:36 PM (GMT 0)
DBrookenz, this can reduce to tears a 46 father of three as well nono
It should not though smilewinkgrin
My friend go to the CRS SAP...To know what's going on.
It's just a small setback perhaps (not clear from what you describe).

What I have done to keep me going is searched and accumulated success stories of people with fistulas throughout the net.
Many of them had this for 3-4 years until the manage to get rid of it.
Usually this meant 3-4 setons plus some surgeries.
What all of these people had in common was persistence and will to survive this thing. They never ever gave up.
yeah
In terms of my case, well...I have the draining seton for 1.5 months now, it's allright overall (sort of). The wound next to the fistula (from an adjacent abscess) is sort of healing, slowly...I will meet my CRS to discuss next steps (possible FiLac) in mid October.
Patience... That's all we can do Brookend.
Posted 9/17/2017 12:58 AM (GMT 0)
Thanks Dimitri. It helps knowing there's someone in a similar boat to me! I have an appointment with my CRS next Tuesday so hopefully I will know more from then. TBH I'd be okay with having a seton for a while. Can I ask a few questions about yours?

Firstly, I have had one before for 3 weeks and it was painful. Not the scratchy part, which was easy to get used to, but after each bowel movement I'd feel really awful, like a pressure in my anus, and then it would ease off later in the day. Did you have that?

Also, my seton fell o ut after 3 weeks. I don't remember being too rough with it while wiping or anything. Do you lead a pretty normal life with your seton? Do you work out or walk a lot, act usually during toilet breaks?
Posted 9/17/2017 12:28 PM (GMT 0)
Hi dbrookenz, sure.
I have no problems with the seton itself.
I had no problems with sports or walking at all. When I am straining in bowel movements I feel a slight pain for a second or two, but then it goes away.
The draining is what annoys me most (which has not really ipmroved yet).
Additionally, my abscess ends where the seton hole is. But the abscess has not fully closed, so I am draining from the abscess still and the seton hole (which I believe are inerconnected from what I can see).
But other than the draining the seton is no problem. It has loosened a bit and maybe it can sting a bit the skin sometimes because it moves more.
Over time it loosens, as the fistula migrates along with the seton lower towards the surface of the skin. But that is a good thing, because as it moves towards the surface of the skin, operations (such as fistulotomy) become easier to do (less muscle involved).
That's why some doctors claim the the draining seton works as a slow cutting seton. Sometimes after a long period it can fall out. From what you describe I believe yours was placed in the wrong way or something. It is not normal for it to fall out so quickly.
So maybe a new experience with a seton might be different.

Post Edited (Dimitri71) : 9/17/2017 8:37:38 AM (GMT-6)

Posted 9/17/2017 3:02 PM (GMT 0)
Hello! I just had the advanced flap surgery 6 weeks ago. Went back to work after 4. It still drains but my Dr said that was to be expected for awhile because 1. I had two fistulas connected to each other, one being rather large and 2. He said the Humira I take for Crohn's disease is keeping the healing process moving slowly, however, I can't stop taking it. He said I would know if it failed possibly because there would be excess blood where the tissue had ripped away at the stitches. I see him again in a couple weeks and hope its still in place. I'm sorry your surgery didnt hold up this time around but you can try again once the tissue heals from the last surgery. Its that or a permanent seton and that means permanent draining too.
This sucks, I'm sorry you all have to deal with it. Glad we have this forum to compare and encourage each other though!
Posted 9/29/2017 1:38 PM (GMT 0)
Hey Brookenz, how're you holding up my friend?
Myself facing some difficulties. It looks like my fistula has a small extension (0.5 cm) The seton comes out and then a there is an extra extension where the abscess was smhair A small granulation tissue appears there and has gotten me really freaked out.
My CRS told me this is nothing to worry about and it will be taken care with the primary track...As you can imagine not the easiest thing to accept...
I am still meeting him on the 15th of October to discuss the FiLac surgery.
I hope things are working out for you. Best Dimitri.

Post Edited (Dimitri71) : 9/29/2017 7:43:41 AM (GMT-6)

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