Developed a rectal abscess which turned into a fistula. I initially sought medical attention for the abscess and was told it would come to a head, burst and then go away. It did come to a head and burst, but a fistula developed and continued the cycle of abscess, burst, drain. I went to a proctologist and he felt around and didn't feel an internal opening and sent me on my way. This was 20 years ago, and I had been living with the fistula since, mostly due to fear (from what I had read online about the risks and failures of surgery).
During this time, I found that by staying away from dairy and by taking psyllium husk fiber daily, I could manage symptoms, as long as the tiny, pinhole external opening would stay open and allow for the slight drainage. However, when the external opening would inevitably close over, I would abscess and burst again. This usually happened a couple times a year, even though I had one stretch of no abscess for nearly 3 years, where I thought this horrible malady was behind me (no pun).
As I grew older, I found that the abscesses took more and more of a toll on my health, and I would run a fever and feel very poorly while the abscess festered before it could work it's way to the surface and burst. I read about the risk of sepsis, and this troubled me and after the latest one, I finally summoned enough courage to have it dealt with once and for all. I went to the ER where they lanced and drained the abscess and referred me to a general surgeon.
The general surgeon diagnosed the fistula and scheduled me for a EUA (Exam Under Anesthesia). The procedure was really nothing to fear. I went it, passed out, the next thing I knew I woke up in the recovery room. I was told the surgeon performed a fistulectomy, where the fistulous tract was excised. There was a frighteningly large gaping hole next to my rectum, which gradually healed over a period of 3 months. However, on the follow up visit to the surgeon I asked "was it hard to find the internal opening?" She replied, "I couldn't find it". My heart sank, as I knew that meant the chances of complete healing were significantly lower.
My fears were well founded, because within a week of the wound closing, I abscessed again. The fistula was back.
I managed to get referred to a CRS (Colorectal Surgeon). He stated that the internal opening must be found and addressed, otherwise it will keep coming back. He scheduled and MRI which showed a fistula going through the sphincter muscle. He told me he would likely need to do a flap procedure and it would take more than one surgery. Fine, at this point I was over it. I was no longer fearful of the procedure (the procedure itself is nothing, the abscesses are far, far worse). I awoke in the recovery room and was told some very good news. Despite the MRI showing a fistula though the sphincter muscle, the EAU showed it to be a superficial fistula and they were able to find and address the internal opening via a fistulotomy (de-roof procedure).
Interestingly, the healing from this second procedure took quite a bit longer than the first, but this time it healed up right and now I think I am healed (knock on wood). I had this second procedure on Feb 19th, 2015. The wound was 90% closed by late May, but still had a tiny hole that took an additional two months to fully close. It wasn't until late July that I could say that the wound was 100% closed.
I'm writing this because I hope others who are suffering with a fistula will be encouraged by my healing to seek proper medical attention for their problem. Living with a fistula is far more painful than the surgery.
I would give the following advice (please note that I'm not a medical professional):
1. See a colorectal surgeon to start with, not a general surgeon.
2. Insist on getting an MRI prior to surgery to help the surgeon "map" the fistula and find the internal opening.
3. Insist that the procedure be abandoned if during the EUA, the internal opening cannot be found.
4. Get a fistulotomy, not a fistulectomy.
Lastly, I already feel like this has been a long-winded post so I left out a lot of details. I am happy to try to answer any and all questions.