In this post, I will be discussing the severity of anal fistulas and the problems that can occur like abscesses and pain.

Let me give a backstory real quick. Back in May of 2018, I had been visiting family across the country in Ohio. I had been experiencing some pain within my left butt cheek for a few days, but being that at the time I believed to be a perfectly healthy person, I thought nothing of it. Flash forward to my best friend’s graduation. I was walking to the car in a large parking lot outside of the venue, and suddenly my vision became blurry. I had assumed that maybe I just needed some water, so I sped up my pace when my vision went black and I collapsed into the driver’s door of the vehicle. I was completely alone, as my friend was going to meet me there, so I climbed in, chugged a whole water bottle and tried to calm myself down. Being that I can be stubborn as all hell, I still drove after, feeling the pain in my butt cheek amplify, but trying to ignore it. I was supposed to fly back home the following day, so I truly didn’t want to be inconvenienced by this. So after dropping my friend off at home, I drove to my grandmother’s house and explained what had happened. At this point, the pain was progressing within just 30 short minutes and I couldn’t sit, lay down, or walk without an excruciating amount of pain coursing through my butt. My grandma, being the kind woman she is, had me show her where the pain was. When I reached down and touched it, it felt like a hard ball had formed under the tissue of my skin and it was radiating heat while also turning a bright red. At this point, my grandma knew we needed to go to the ER, because something was so very obviously wrong.

When we arrived to the ER, I had been absolutely sobbing in immense pain and could not do anything without feeling like I was going to die. Immediately, the doctors began doing blood work and some imaging, like a CT scan, to try to pin point what was going on. They had given me Morphine to help ease some of this butt cheek burden of mine, and eventually my blood results came back. I had over a 24,000 white blood cell count. The normal amount in a healthy human is 10,000-11,000. This meant that I had developed an infection. An infection in my butt cheek. I was mortified. Not knowing how this could have ever happened to me, my results from the CT scan came back and they discovered my lovely little abscess that has remained a literal pain in my ass for four years now. This beast of an infection had completely taken my life over. This was the beginning to my life with Crohn’s and I had no idea of it yet.

So after being admitted, they kept me on pain meds and doctors began discussing what the best course of action would be. Two days later, they had decided to do a bed side procedure to drain it. Bed side meaning I was FULLY awake and aware. I had pain meds and they numbed the area on my butt cheek, and took their little tools, cutting into my flesh and let the fluid emerge out all over the place. They informed me that this had been festering for a little while now and that sometimes abscess pain can come quite literally out of nowhere. There was enough fluid to fill a full glass. Yeah, disgusting for my first time experiencing anything of this sort. I was far too embarrassed to tell any of my friends, so I had lied and said it was in my thigh. Funny how I’m so open about everything now with no shame, but back then, I cared too much about what other’s thought and I felt gross. Let me be clear though, this is absolutely not gross. The doctors told me that even perfectly healthy people with no health issues and who even shower daily can still manage to get one of these little fuckers. They are truly evil.

I was discharged the next day and forced to stay in Ohio for 3 more weeks to keep up with my post op appointments, and also had Home Health Care coming over to my grandmas house every other day. Why, you may ask? Because the abscess had to be packed and dressed. Meaning that a piece of woven gauze had to be shoved deep up in there and pulled out two days later, replacing it with a fresh new piece. That way, the wound can stay so fresh and so clean. That experience, sucked even more. Because having nurses poke around with the end of a thin wooden stick while shoving gauze into your incision was hell.

After I returned home to Arizona, I had gotten in with a surgeon who decided to take a look at it. They informed me of the same the prior doctors had, that anyone can get one of these, but it could also be related to underlying causes. But alas, I was given no referral to any other doctors, and was wished best of luck in hopes it would heal itself from there. It hadn’t. And a month later, I found myself walking around in college, feeling even more pain once again. Something felt terribly wrong and I worried that another abscess had possibly formed. So, my mother took me to the ER and long story short they had discovered that not only had another abscess poked it’s ugly head back in my cheek, but something called a fistula had made itself comfortable in the home of my body, connecting itself to the infection site. This warranted a referral to a GI. Finally! Someone who can give me some damn answers on why my ass literally hated me. This GI had decided we needed to get a colonoscopy ASAP to first address if we had something else going on up in there. So, a few weeks later, I found myself under the influence of anesthesia, and waking up to a diagnosis of Crohn’s Disease. “What the hell?” I had thought to myself, never once hearing that term before. Ha, look at me now, guys. Well, because of this, he knew we needed to fix this fistula issue before it closes and entraps the abscess in my body once again. The worst thing that could happen when you have recurring abscesses, is that wound closing because then you’ll need to get it drained, and drained, and drained. It would be an endless cycle of cutting open the skin and well, you guessed it, draining.

So, here’s where we get to some technical stuff. What the hell is a fistula? And why do they happen?

A fistula can be described as an abnormal connection, or as some call it, a tunnel, that connects two organs or vessels that are not supposed to normally connect. They can be caused by injury or surgery. So in my case, this abscess formed a pocket in my butt cheek and eventually a tunnel formed from the deep pocket, all the way out to, well, my butt hole, due to the drainage surgery of said abscess. The only ways to really truly cure a fistula would be by having surgery and being on medicine. I will be beginning Remicade infusions for my Crohn’s, and thankfully, Remicade helps heal fistulas as well. But clearly, I have had several surgeries on said fistula over the span of the past four years.

Obviously I explained what happened with my first abscess/fistula situation. When you have recurring abscesses and a fistula, the best course of action, at least in my case, was to place a seton. A seton is basically a little rubber-like band that they thread through the fistula to make a loop. The purpose of a seton is to keep the fistula open so when another abscess forms, it will drain out of the hole. The shitty part of that, is I have worn pads every day for the last four years because the constant draining of my second butt hole causes to leak through my underwear and clothes. It’s gross, I know. But I’ve always said that these things aren’t pretty, and I’m not going to sugarcoat any of it. So, after getting that seton placed the first time around, abscesses still occur, but they drain out and so on and so forth.

But, last year in 2021, my seton snapped and fell out. This immediately worried me, as now that hole that needed to remain open to continuously let out any abscess fluid, blood and pus, would begin to close and entrap the infection within me once again. So, I saw a surgeon who set up surgery and got to work. When I woke up from surgery in April 2021, I was told that he could not complete the seton placement, because the scar tissue in there was, and I quote, ‘hard as bone‘. But, he knew we needed to get it done, so we set up another surgery where his partner/specialist came in and they managed to not only get one seton in place, but TWO. So there I was thinking that my problems were solved and I’d be good to move on from this butt cheek nonsense.

I was wrong, per usual.

About a month ago, I woke up in the morning to extremely bad Crohn’s pains. A few days later, I practically couldn’t move and I was struggling to even function so my husband took me to the ER and sadly, they didn’t seem to believe me. Look, I know more than anyone that the opioid crisis is a major epidemic. But having an invisible illness like Crohn’s, makes it very hard to find pain relief without looking like you just want some drugs. It probably doesn’t help that I have a sleeve of tattoos, because let’s be honest, when you’re tatted, you get judged. So the ER dismissed my pain and luckily a nurse heard me crying and got the doctor to prescribe me my nemesis, Prednisone. (Steroids can be a great temporary relief from inflammation, but I hate them and hate the side effects. And they should NOT be used for long term prevention). So alas, I went home and after two weeks, the prednisone just seemed to- stop? I was in pain once again and this time, I spent a whole night pooping my guts out and vomiting my brains out. I couldn’t keep any fluid in me, and I became severely dehydrated. In the morning, my grandmother took me to a different ER, where they did a CT scan and saw, yes, my inflammation was horrible. My potassium levels had dropped so I was given IV potassium, and given lots of fluid and Morphine. But guess who decided to make another appearance! My lovely little abscess friend. And the doctors informed me that this abscess was deep and festering for quite some time now. Now, this hospital I went to didn’t have a surgeon that felt comfortable enough to perform on me, so they transported me in an ambulance to a bigger one. And boy, I loved it there! The 6 days I was there was the most amazing experience I have ever had at a hospital. Every single nurse, doctor and staff member was absolutely amazing. I had never felt so validated and comfortable in my life. But the pain was worsening and at one point I was hyperventilating in my room and screaming and crying in pain. That’s when they stepped up the pain medication game to Dilaudid rather than Morphine. This calmed me down and helped tremendously, but remember, pain meds are only a band aid for short term solutions.

So anyhow, a surgeon came to see me and ultimately decided we needed to put me under and clean out the abscess and pack it with gauze. So, Saturday afternoon I was taken down for my tenth surgery and the surgeon cleaned out the fistula/abscess and packed it with woven gauze. Sunday afternoon, they took the gauze out and then Monday morning before my discharge, the surgeon came in and re-packed it. Today, I had to remove it myself, and now it will stay removed. I still have the setons placed and in the hospital I was on IV antibiotics. I am now on oral antibiotics for 4 days and Prednisone for 26 days, for my Crohn’s pain and inflammation. But, due to this admittance, I found myself an amazing new GI who is currently working on getting me approved to start Remicade in a few weeks when my infection is gone, along with an oral biologic. We are taking action to combating this horrible disease that continues to find ways to make my body miserable, and I have never felt so confident and positive before in my life. My concerns were validated, and my pain was acknowledged and I am so confident with my new team of doctors and ready to kick Crohn’s in it’s ugly ass!

So to recap:

• Abscess: A pocket of pus, blood and fluid caused by an infection that can form anywhere inside your body.
• Fistula: An abnormal connection, or ‘tunnel’ between two body parts or organs.
• Seton: A rubbery, silk or nylon suture that is placed during a surgical procedure in a fistula tract and tied externally to keep the fistula tract open to allow the abscess and infection to continue to drain out of you, helping you heal.

And remember, friends, if you ever feel a persistent pain radiating in your butt cheek, CALL A DOCTOR. Don’t let it worsen, because the bigger it gets, the harder it is to manage. Don’t be like me where you try and push through it. Being stubborn will forever be my downfall.