I survived a cutting seton (and so can you)

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I survived a cutting seton (and so can you)

Postby cuttingsetonsurvivor » 24 Apr 2018, 19:06

Hi! I am just reaching the end of my anal fistula journey, after fourteen months.


When I was considering how to treat it,I did a lot of surfing the web looking for people's experiences. And I got very little out of it, other than feeling more anxiety. So I wanted to jot down my experience of a cutting seton. Maybe it will help somebody make their own decision.

I worked with Dr. Howard Kaufman at Huntington Memorial, in Pasadena. If you are in the area, I could not more highly recommend a surgeon. He is incredibly personable. He gave me his cell number at one point, so I could check in the night after surgery. He's a terrific guy. None of the arrogance you often find with surgeons.

He had taken care of a fissure several years earlier, so I trusted him. And then his name came up on a paper about the LIFT procedure, on which he was the final author. So I was so excited to have a top surgeon doing a surgery he had helped pioneer. First, over the summer, he inserted a draining seton to get the tissue healthy. Then, in early October, he did the LIFT.

It failed. This was a crushing disappointment. It is hard to say why. It may have been sex. The surgeon told me to abstain for two weeks. And when two weeks was up, my wife and I were eager to get back to it. And after a couple days of that, I felt some shooting pains in my butt. It didn't fail right away. But that may have been the turning point. Or not! Regardless, if I could do it again, I might wait another couple weeks, as much of a strain as it was on the marriage.

So there I was in the surgeon's office, on Tuesday, November 22nd. Back to square one. He told me about a laser treatment, but he was still trying to convince the hospital to order the laser. And I had been dealing with an oozing fistula since March. So I was tired of it. I was doing a lot of research. A week or two earlier, when it seemed like the LIFT was a FLOP, I had talked to his nurse, Kris (also a wonderful, helpful person), who basically said, the fancy surgeries are risky. The simple surgeries work. I felt like every time I put off a cutting seton, in previous appointments, she had a look in her eyes like, "You are only delaying the inevitable." Maybe I projected this.

I was worried about incontinence-- I am in my early 40s, and would like to remain in charge of my anus for the next half century or so. And I worried a lot about pain. The surgeon told me the pain wouldn't be so bad. Like getting your braces tightened, he said. Which I recall hurting quite a bit. But in a fit of bravery, and feeling completely exhausted from four procedures so far that year (two abscess draining and then the draining seton and then the LIFT), I said, schedule me for tomorrow, let's get this done. I think he was taken aback. But sure enough, he managed to squeeze me in for the next day (his usual day in the OR). The whole time from then until I went under, I kept telling myself this was a mistake, I should have waited. I was dreading the pain. But I had managed to get on the schedule for surgery on the next day, and I felt like I couldn't make in imposition like that and back out. And anyway, I trusted Dr. Kaufman. I went with it. November 23rd surgery.

On Thursday, the day after, we hosted a giant Thanksgiving dinner. 20 guests. This was not great timing. Do not, I repeat DO NOT, entertain a houseful of people the day after getting your cutting seton. Did I survive? Yes. Did I enjoy the company? No. And as soon as the last guest was gone, I collapsed. That was too much.

That said, the real pain didn't kick in until Saturday or Sunday. And it hurt. Tylenol and Ibuprofen didn't really touch it. Norco helped me to nod off, but I wouldn't say it made the pain go away. The thing that really helped was Sitz baths. They were like heaven. Even on their own, but Norco plus a Sitz bath (with the wife checking in to make sure I hadn't nodded off and drowned) was the best. But on Monday I had to go back to work. And that was a tough week. Lots and lots of (useless) Tylenol and Ibu. Walking around like an old man. Really uncomfortable. And my stomach was starting to hurt from the NSAIDs.

That lasted another week. The following weekend I spent basically in a Sitz bath the whole time. On Sunday, halfway through the day, I got out of the bath and the pain was gone. That morning I was in pain. That afternoon, I was fine. It was just like having a plain old draining seton. Painless. Sweet relief. Ten and a half days later.

So then, when I went in for my three week tightening, December 19th, it was right before our vacation. I said to the doctor, are you sure this is a good idea? I have to sit on an airplane later that day, for a red eye flight. He said it wouldn't hurt that badly. Have a scotch before the flight.

Now, I really, really like Dr. Kaufman. But that was a crock. That first tightening killed. Not that night on the red eye. Just like the surgery, it didn't hurt so bad the first 24 hours. But by the time we got off the plane, the pain was catching up. On our vacation. The good news was I didn't have to go to work. The bad news was... It was my vacation. Eight days of pain. On the ninth day, it was gone. But on day 8, it was still pretty lousy. Both times, the pain left kind of suddenly. It tapered off. But real relief was sudden.

Sleeping through the pain was the hardest part. Somehow, that's when it was the worst.

The third tightening was on January 16th. I went in feeling dread. I was working, and I didn't like hobbling around work in pain. I have to concentrate at my job, and pain is hard. And I was in crunch time, with deadlines every day. But I really wanted to keep the whole experience to one year (the whole thing had started February 28th, 2017). I asked Dr. Kaufman to go light. I guess he obliged, because there was no pain to speak of. No braces tightening I had experienced in orthodontia was ever that easy. I mean, it was really painless.

On February 13th I had my next tightening. It was still crunch time. Dr. Kaufman went light. No pain at all.

Here's the quick version of the story: It never hurt again. Even after crunch time, when I was tired of having a fistula, and I was telling the surgeon to just go for it, tighten it all to hell (he didn't, he said he didn't want the thing to snap) it never hurt again.

That's not completely true. On April 10th I went in for my seventh tightening. This one hurt. But unlike the surgery and the first tightening, this one hurt right away, and then the pain was gone an hour later. The next morning, I was wiping my butt, and the seton came out on the toilet paper. Didn't even feel it. Looked down, and there it was. Like a space alien or something. Or actually like a ponytail with eight hairbands. Here:

https://www.dropbox.com/s/1ax78xr1mxzhq ... .jpeg?dl=0

I called the surgeon's office. They made an appointment for the next day. We celebrated.

Now it is April 24th, and it isn't completely resolved. I get a tiny amount of drainage. But less and less. Dr. Kaufman explained that there is still a little hole left. He has been treating it with silver nitrate. He had been doing that to treat the old fistula opening, as well. He always warns me that it might sting, and it never does.

So... in summation... The surgery hurt for 10.5 days. The first tightening hurt for 8 days. I wasn't incapacitated. But it hurt for real. Ultimately, five months later, and with very little additional pain, I no longer have a fistula. Which is... really nice. No more surgery! And I am still in control of my anus.

I mentioned to Dr. Kaufman and Kris this morning that I was thinking of posting my experience, because I saw so little that helped me when I was deciding whether to do it. They said please do it, it would help a lot of people. I hope this helps people.
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Re: I survived a cutting seton (and so can you)

Postby chachacha » 25 Apr 2018, 00:05

I'm sure that it will. Thank you so much for sharing your experience, and congratulations on your success!
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
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Re: I survived a cutting seton (and so can you)

Postby Hedgehogbum » 30 Apr 2018, 07:41

Wow what an ordeal. I'm so happy you are feeling better and thank you for sharing!
Oct 17: anal fissure
Feb 18: 6 weeks rectogesic
Mar 18 LIS
Post-op retears: 8 weeks, 13 weeks

Still sore and on my healing journey
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Re: I survived a cutting seton (and so can you)

Postby Dimitri71 » 10 May 2018, 03:54

Hi everyone,
I am 8 days past the cutting seton/fistulotomy surgery. The cutting seton did its job and fell off on Tuesday 8/5 two days ago.
Unfortunately, still drainage going on, not much different than other previous surgeries. Really blue about this.
Any feedback in regards to recovery from someone who had a fistulotomy or a cutting seton surgery in regards to when did the drainage stop would be really approciated. Doc says its normal for 2-3 weeks.
Cutting seton survivor, how is drainage for you now?
Best to all.
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Re: I survived a cutting seton (and so can you)

Postby cuttingsetonsurvivor » 10 May 2018, 09:40

I was still draining just a tiny bit a few weeks ago. It continues to diminish. If I really have to fart, it's impossible not to fart.
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Re: I survived a cutting seton (and so can you)

Postby Dimitri71 » 11 May 2018, 03:39

Thanks Cutting Seton Survivor. Was your drainage similar to prior to the surgery? When you say diminished you don't have to wear a gauze?
I get a yellowish discharge (not brown or feces staff).
In regards to the very fine topic of farts Ha ha,,,,I face a little bit of your situation as well.
The good thing is that gas through normally now, not through the fistula anymore (sorry TMI).
All the best.
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Re: I survived a cutting seton (and so can you)

Postby cuttingsetonsurvivor » 11 May 2018, 09:06

Yes, no more gas through the fistula is nice. I think there's still a groove left that has yet to heal, which is why I can't hold it when I am really gassy. I expect that to heal up. Fingers crossed.

I have way, way less drainage than before the surgery. I have almost no drainage. I do still wear gauze (actually, I use cotton as it absorbs better and chafes less) but I think I am a matter of days or a week away from not needing it anymore. I rarely find anything on it.

And mostly just yellow discharge. No fecal matter.
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Re: I survived a cutting seton (and so can you)

Postby Dimitri71 » 28 May 2018, 04:43

Hi cutting seton survivor, how are you? I am on day 20 and wound is healing, although I still get some (significantly lessened) drainage.
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Re: I survived a cutting seton (and so can you)

Postby cuttingsetonsurvivor » 28 May 2018, 10:05

My experience was that it got a little worse after tightenings, but a little less so every time. I hope your first couple of weeks weren't too painful?
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Re: I survived a cutting seton (and so can you)

Postby Dimitri71 » 28 May 2018, 10:08

Hi the seton fell off 20 days ago.
Now looking for the wound to heal 100% not yet there though, there is still some drainage....
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