My middle transsphincteric fistula success story
Hi!
I want to share my experience with a middle transsphincteric fistula
I spent weeks reading horror stories about fistula surgery, convinced that a cutting seton was going to be one of the worst experiences of my life. It turned out to be nowhere near as bad as I expected.
It all started with a perianal abscess, which ended up requiring emergency surgery. I arrived at the hospital with a temperature above 39°C and unbearable pain in my bottom.
After the surgery, the pain disappeared completely; although I was still feeling weak and uncomfortable, it wasn't too bad at all. I was hoping that was it, but the wound was still not closed after a month: the surgeon re-opened the partially closed wound to help it drain more, with the idea that it was healing too fast, preventing proper drainage.
Sadly, one more month later, the situation didn't change, so I had further tests and found out the wound was an actual fistula: middle transsphincteric, as per the title. I am based in Amsterdam, but I have also checked with a surgeon in Italy (I am Italian, and often there to visit family and friends): in Amsterdam, the default procedure is to treat the fistula with a laser. In Italy, I was advised to go with a cutting seton.
After doing some research, this was the picture I had in my mind:
- The laser is said to be the least painful of all the procedures to treat a fistula, and the least invasive. Con: it might take more surgeries because it is difficult to reach the whole fistula's surface with the laser. So it will take longer to fully heal, and it might not eliminate the fistula.
- The cutting seton brings an aura of terror with it: the name already made me keen to do anything in my power to avoid it. I was told that the cutting seton had a very high success rate and, in my particular case, offered the possibility of treating the fistula in one procedure.
I have checked the web looking for info related to the cutting seton and the surgery to place it, and I was seriously frightened by it. I felt like I had to do it, to do it once and for all, and to be done as fast as possible. I am a software engineer, and I really need to be able to sit for long periods. I didn't like the idea of having to go through multiple surgeries, and I didn't want to take the risk that those surgeries would not be effective, like the laser could end up being.
This was the reasoning that made sense to me at the time so, really going against myself and embracing my fear, I chose to go with the cutting seton. The surgery happened in Italy. Of course, I have read plenty of scary, horrific posts in here on Reddit too about it, and I went through the surgery with those in mind, ready for the worst pain ever experienced. The words from my surgeon, who told me that the surgery and the cutting seton were a pretty standard procedure, well handled with painkillers, didn't stick with me. I was miserable and hopeless, but determined to eliminate the fistula asap.
And so, after stressing every friend around me about how scared I was, every family member, and over-talking with the family dog more than usual (he is used to that, but with the fistula I really reached my record), the surgery day arrived, and this is my most honest feedback for you:
- surgery: I felt no pain at all. Lemme be the most honest: from 1 to 10, I felt 1. I didn't even need the extra painkiller after it. It was surprisingly smooth. I spent one night at the hospital and then went back home. A walk in the park.
- cutting seton(s): the first time feeling it with my hand was... strong; I felt like Neo from The Matrix when he is just freed, reaching the plug at his neck, knowing it is there but hoping it is not. I said "it", but there were two: I understand it is the standard way to go, to add one more, so in case one breaks, there is a backup already in place. Well, it takes a while to get used to those. In my case, I was in charge of pulling them myself every day, two times per day: the surgeon told me to pull as many times as I wanted, which made me feel comfortable. The deal was: the more pulling, the faster the setons would move through the fistula.
The first week was the hardest: sitting is not possible, nor is walking. So I was basically in bed most of the time. The first poo was not a pleasant experience at all. I can't deny it was painful, but not as much as anything you would read online. Actually, don't read anything online, but success stories!! The good thing is that you get used to the setons fast, so things improve quickly.
In my first three weeks, I focused on avoiding sitting. By the third week, I was able to start walking quite ok-ish again, although I still avoided sitting. Those three weeks were time to digest the fear and to get used to the setons. And after those three weeks, things got much easier.
I had a visit with the surgeon a week after the surgery, and then every two weeks. After the third week, the surgeon showed me how to pull the setons: I remember being frightened; that was the moment I was really fearing. But at that point I got less uncomfortable with the setons, so at least a part of the anxiety was gone already. When the surgeon pulled a seton, I was ready to feel the sharpest pain ever, ready to choke out a scream of pain... and it was really not the case. I remember the surgeon telling me he was pulling, and me asking: "Wait... are you pulling already?" I could not even feel the pull, nothing at all. The scary "seton pulling", of which I read the most terrible things online, the nightmare of every man and woman, the gold medal of torture, and I could not even feel it! The pulling, as the surgeon told me to do, it had to be delicate, just done many times daily.
That made me feel very relieved, and the pulling went pretty smoothly. The setons were removed after about a month and a half.
In general, I think my experience was very good: I feel grateful to my Italian surgeon, who was very supportive and always available at every stage and had a big part in making my experience so good. The pain I felt was definitely manageable, and now I regret reading so many scary posts online. They did nothing but make me super anxious and stressed. If a friend needed fistula surgery and asked for my opinion, I would tell him/her to stay relaxed; that is going to be fine, that is going to be manageable!
I wish this post could spread some optimism among those who are dealing with a fistula right now! I would be happy to add any more detail if asked.
Best,
Luca