Posted 4/24/2018 11:37 PM (GMT 0)
Hi! First of all, I have not been diagnosed with Crohn's disease. I have, however, had an anal fistula. Which is just now, after 14 months, resolved (almost).
When I was considering how to take care of it, in consultation with my surgeon, 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.
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 unpleasant as that may be in the moment.
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 NSAID.
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.
No, 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/1ax78xr1mxzhqpz/IMG_9934.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.