Hello fellow unluckiest people in the world! Nice to meet all of you and to find this forum (I wish I had found this months ago).

I just underwent my 2nd fistulotomy on Feb 13, 2019 and am currently recovering.

This terrible journey for me started on Aug 20th of 2018 when I went in for what should have been a straightforward hemmerhoidectomy surgery after suffering from hemorrhoids for the better part of a decade. That recovery was absolute hell on earth (worse than this actually if you can imagine it) and I developed an infection around 1 week in. As a result of that, a fistula formed in my peri-anal area, right near the opening in the top left part of the anus.
I went back to my surgeon, who had me do an MRI with contrast that did not turn anything up. After an exam though and hearing my symptoms, she agreed it was probably a fistula and scheduled me for what was essentially an exploratory surgery on Dec 4 2018. It was agreed that if it was a simple fistula, she would just preform a fistulotomy and if it was more complex, I would likely awaken with a seton drain.
I woke up in a hospital bed, with the sheets soaked in my own blood but surprisingly little pain. I was able to pee and within an hour they where rushing me out of the hospital. Perhaps it was because of how much worse the hemorrhoid surgery recovery was, but overall the recovery from that first surgery seemed fairly mild. I would experience burning after a bowel movement, but rinsing myself off in the tub and then filling it with hot water and epsom salt (sitz bath) would usually ease that pain in about 5-10 min. Out side of that, it was just a dull ache / stinging and I ended up only taking pain killers for 2-3 days.
All seemed to be healing well and my surgeon seemed very happy with my progress when I went for follow ups at 1 wk and 3 wks. Right after week 3, I started to feel like I was almost completely healed up and was getting very encouraged. A few days later though, I felt that all too familiar feeling of the fistula and it all came crashing down around me. Seemingly overnight, I was completely back to square 1 with constant draining, followed every few days by a bit of swelling before it would burst and drain and repeat.

Sure enough, another visit to the surgeon confirmed my worst fears. She confirmed it seemed like it hadn't worked. At this point I was FINALLY allowed a referral to a colorectal specialist. Because of my insurance (american health care, Kaiser Permanente) the only way I was able to see a specialist was with a referral from the surgeon. The only way to get a surgeon to give you that is for them to essentially throw up their hands and give up, which I've found most of these guys don't like doing...
The referral took forever to process but finally I was in to see the CR specialist on Feb 1. Forget about researching the doctor I wanted, I was literally given 2 options. After an excruciating office visit with full ano-scope, finger exam etc, he confirmed what I already knew (again). Yes, I had a fistula and yes we'd have to operate again.
The second operation happened Feb 13th. It went mostly smoothly, except for whatever reason the nurses couldn't get an IV in me. My veins where infiltrated 3 times before they finally got an IV in on the 4th time, leaving me with massive bruises all over my arms, wrists and hand. My hand actually swelled up to about the size of a tennis ball because of all the fluid they shot into me after missing the vein!
Again, I woke up in a pool of my own blood, stuffed full of gauze and confused. I was able to pee immediately and 45 min later I was again being rushed out of the hospital. For whatever reason though this time, I seemed to have a bad reaction to the anesthesia. Even in recovery, my resting heart rate was between 100-120, which is very high for me, about double normal. The outpatient nurse mumbled some nonsense about "everyone has a high heart rate in the hospital", unplugged everything and sent me on my way. For the next 4-5 days every time I would stand up I would feel like my heart was about to beat out of my chest and I continued to have a heart rate of up to 120 just laying in a bed doing nothing. I got scared on day 3 and finally went to an urgent care where they hooked me up to an EKG, said I had normal rhythm but a fast pulse and told me I basically just had to wait it out.
The wound itself bizarrely didn't hurt at all until I had my first poop on day 2 post op. He didn't use any numbing medication either (the first general surgeon used a topical numbing agent both times that would last a couple days) so I'm not sure how he pulled that off. The pooping itself really didn't hurt to bad while it was happening, it just burns like hellfire afterwards. Sort of like someone is holing a lighter up to your butthole. That is quickly solved though by jumping into the tub and washing myself out with hot water out of the shower head. Once I'm clean, I fill up the tub, put some epsom salt in and soak for about 20-30 min. Usually after being under hot water for about 5 min, the pain almost completely subsides. I feel great outside of that as well afterwards. Outside of the odd pinch or sting, I could almost forget I even had surgery until I have to poop, even at this early stage (as I write this I am exactly 6 days post op). I'd been taking pain killers for the first day and half, just out of habit before I realized I really didn't need them. My only pain killer now is an ice cold beer in the tub after my BM's : )
That's most of my story so far. I'm really hoping that this time does it. I really don't know if mentally, physically, or financially I can handle any more surgery. I'm looking at about $8000 (at least) in medical bills as a direct result of these 3 surgeries and I'm getting concerned about my overall health as I've been mostly bedridden since August 2018. I'm a younger guy (29) which I think helps, but it's still concerning as I was fairly active before this. The mental part of this is a tough hurdle to jump too. Every single one of these surgeries is terrifying, painful and humiliating and the thought of this not working again and having to go through it all again leaves me with frequent panic attacks and anxiety. I think even when I eventually walk away physically healed, this whole experience will leave me with PTSD.

Here's what I've been doing for my fistula surgery recoveries:

- lots of hot epsom salt baths

- I eat the same exact thing, every single day. (same in, same out lol). I do this for the 2 days leading up to the surgery as well, with a 12 hr fast leading up to the surgery itself. I find that helps me not have a bowel movement until at least day 2 or 3 if I time it right. I have IBS and am very sensitive to raw fiber, so I eat 1 egg, toast and a small hash brown for breakfast and then one plain baked chicken breast with either white rice or mashed potatoes and a slice of bread for dinner. I drink a lot of water throughout the day as well and take 1 stool softener daily (you may want to up that if you are on opiates for pain though)
- I didn't do this the first time, but the specialist instructed me to use a very stringy, loose style gauze to just gently press up against the area (not packing it) to absorb and wick away the blood/ puss. I basically just shove it up in my but crack after cleaning off after a shower/ bath and change it about 5-6 times a day.
- I have not been taking any pain killers outside of the first 24 hours outside of IB profin twice a day.

My fistula was a "simple" one, described as superficial both times by both surgeons. There was no wound packing.

At day 6 now, the wound is weeping quite a bit of puss and a continually decreasing amount of blood. I really didn't bleed all that much, mostly just enough to color my gauze or leave a little dusting/ streak of blood on my stool.

I'm frankly not really in a position to really give advice on how to deal with this, as I'm still very much in the middle of it all. In fact, with my surgery failure vs the relatively low rate of failure, maybe it could be best to look at what I did and do the opposite!! : )
Here is the advice I do have though for anyone about to undergo this or who is currently recovering like me:

DO NOT LET A GENERAL SURGEON TOUCH YOUR ANUS WITH A KNIFE

I can't stress that enough. I had a wonderfully nice general surgeon at the end of the day, that was no substitute for a battle hardened and experienced CR surgeon who has seen a million of these things. My insurance prevented me from doing this unfortunately, but looking back I should have just canceled that plan and bought a new one from another insurance company, regardless of cost. It really was just not worth it to have to go through all this twice in a row. I wonder too if that original hemorrhoid surgery had been done by a specialist if I would have developed the infection and fistula at all... You only get one butthole. Be picky about who you let slice into it.

I don't know if the gauze between the butt cheeks thing will actually make a difference in how it heals, but it has made things a lot easier to keep clean. I'd recommend doing that, but make sure you are using only sterile gauze.

A good support network is everything. I couldn't have gotten through all these surgeries without my wonderful girlfriend who was there with me the whole time, wiping puss, blood and liquid crap off the bathroom floor and never once complaining. Take plenty of time off work and don't try to rush back into anything. Patience is everything as I've realized this is a marathon, not a sprint.



On another forum I read some encouraging words that I have been repeating to myself as a bit of a mantra that I will leave you with:

"It may take a very long time, but in the end, the fistula ALWAYS loses."

I'm going to win and get my life back if it's the last thing I do. I don't care if it take 100 more surgeries. (ok fine I do care but you know what I mean). Never give up, don't get discouraged and remember you aren't suffering from this by yourself.

Thanks for letting me ramble. I'll do my best to update as I continue to heal and feel free to ask any questions. I'm off to the tub...

Hi 3rd, your story really freaked me up, I could never imagine people have to ever go through this in life. Sorry my friend but honestly since i do not think it can ever get much worse than that I conclude that the future for you can only look bright. I wish you all the best in your recovery and please, please, remember to stop by this forum a few years from now and tell people a few words about how you got your life back.
Good luck!

Well, most people are dealing with 2 surgeries at least for these sort of stuff. The first one may not be enough due to an on current infection. It’s hard to know the extension to cut if it’s inflammed. That’s why fistulotomy should be done when infection and inflammation subside.