hospital

Abscesses, Fistulas, and Setons, Oh My!

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.

https://mehtaperturk.com/en/anal-fistula-symptoms-surgery-treatments/

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.

https://www.ibdpassport.com/en-nz/travelling-ibd/travelling-crohns-disease

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.

Tubal Removal

Why I made the hard decision to get my tubes removed, what a salpingectomy is, and why it was crucial for me to consider not having anymore kids.

Hello everyone, once again. I’ve decided to go over a sort of touchy subject, as it’s hard to acknowledge the fact that I will never be able to become pregnant again. At first, I was 100% excited to never be pregnant again (I hate being pregnant for an abundance of reasons, one being the morning sickness I got both times and another is the low confidence I get as I become bigger.) but once it actually happens, and you really cannot, it kind of sucks. Especially only being 21 (and I always dreamed of having tons of children). So why did I make this decision?

Well, for starters, I’ll give you a little backstory of my pregnancies. My first son, Caspian, was born when I was just 18. It was a week before I turned 17 that I found out I was in fact, pregnant. At first, I was TERRIFIED. But the idea of a child grew on me and I was overcome with love and happiness and excitement. My pregnancy was healthy for a while. Despite the morning sickness all day and night up until the day I gave birth at 37 weeks pregnant. Around 35 weeks, I fell out of bed one night, and hit the dresser. It wasn’t that hard, honestly and I mostly just cried because I was startled and it scared me. The day after my mom and I went out and did a maternity photo shoot in my Star Wars Padme cosplay. But when we were there, I was experiencing cramps in which I just assumed was braxton hicks contractions. But as they progressed, I finally decided it’d be best to go to the ER just to see what’s up. So we go, and there they see that I am in fact having real contractions, which were causing Caspian’s heart rate and oxygen to dip pretty drastically every time. They monitored me in the hospital for a week, before deciding to let me go home and informed me I was to come to the triage every 2 days to get monitored for an hour. My first time going back, they admitted me once more, and also did a scan, noticing that there was a placental abruption. I was freaked out. But they wanted me to wait until I was exactly 37 weeks, so there I waited yet another week until they finally induced me at midnight and I gave birth around 7:40 am to my little bean. They proceeded to show me the abruption, while announcing how much larger it was than they had thought, so it was good he came out. But other than that, we had no other issues and Caspian is about to be 3 with still no health problems.

Now, my second pregnancy, as many of you know, took a completely different and drastic turn. Those months of being pregnant were the most terrifying time in my entire life. So let’s start from the beginning. I found out I was pregnant with my second son, Fox, in August of 2019, at 20 years old. And honestly, my fiancé (husband now) and I were actually pretty excited. Him being a first time dad, especially added to the thrill. But toward the end of August, a scary situation happened that I will never forget. One morning, I woke up, and went to the bathroom, only to notice blood. And I mean a SHIT TON of blood. Dark red blood. And I immediately began sobbing, thinking I was having a miscarriage. Now one thing many people do not know, is I had had a miscarriage prior to this very early on that really messed me up emotionally. So right away, Chris and I drove to the ER, frantically but trying to keep positive. We arrived, and at the time I was I think maybe 3 or so weeks pregnant? I can’t totally recall. So they get me into a room and take me to go get an ultrasound. After, I’m escorted back to the room where my then fiancé was and we waited. And waited. And waited. Until finally a doctor came in and informed me that there seemed to be a sack of something in there (I’m so sorry, I forgot what it was called but it was a ball of blood) and couldn’t detect any sign of a baby. So they called it a “threatened miscarriage”, and our hearts just broke. They had given me a number to an OB who wanted to see me in the office in exactly one week and wanted me to get bloodwork done in 3 days because the bloodwork could determine if my pregnancy was progressing. So after three terrible, nerve wrecking, heartbreaking days, I went to get my blood drawn and then 4 more days passed and I went to the OB’s office. I was immediately taken into the ultrasound room after meeting him, and as they scanned around for a little while, there it was. A little baby bean just chilling next to that gross weird sack of blood. It was the biggest weight lifted off my chest to see I was in fact not having a miscarriage. So from then, I continued to have routine checkups.

Now, fast forward to about a week into November. I was 21 weeks pregnant having my mid pregnancy scan, when the room was complete silence. I was alone, as my husband had to work, and I had been used to going to appointments by myself from my first pregnancy. After an hour of the ultrasound, the tech left the room, and came back insisting I go wait in my OB’s office so he can speak with me. And that’s when I knew there was something wrong. I never did that with Caspian and the vibe just felt- off. So I wait. And wait. And wait. For about 45 minutes as my OB had actually been performing a surgery. Once he was done, he came in and sat down. (My OB just an fyi is the most amazing man and I still to this day text him with questions I have and every time I see him, he always asks for pictures of Fox).he looked at me and informed me that my son had multiple anomalies, one including fluid on his brain (hydrocephalus), and what seemed to be some problems with his abdomen. He informed me as much as he could about Hydrocephalus, but this was now a more specialty doctors area, so he referred me to an MFM (maternal fetal medicine doctor). I had to wait until after Thanksgiving so for a few weeks I wondered so many things that just stressed me out majorly. I socially distanced myself (which we all seem to have to do now lol) from pretty much everyone except Chris. I was going through a lot of depression, more than I had before pregnancy, and I just felt lost and scared. So I go to my MFM doctor and they do a like, a 2 or something hour ultrasound, where they find and confirm hydrocephalus, but also duodenal atresia (his intestines weren’t connected) and some tiny holes in his heart (you may read about these things and what they mean on my other blog posts). So from then on I had bi-weekly appointments with my MFM to do ultrasounds and such. Eventually, they find that Fox’s thumbs are adducted (meaning they go in toward his palms, which is something he still struggles with and will probably need splints down the road).

Now adducted thumbs is an indication of X-Linked hydrocephalus (L1cam). This meaning, he got this from ME. Basically, x-linked is only in boys, and mothers/girls can be carriers of it. They asked if Cas had any disabilities and were shocked to find out no. But in short, it’s a 50/50 chance of any future sons I may have to have hydrocephalus as well. All the other issues this poor kids suffered from, well, we have NO IDEA where they came from!

Well, then a month after my wedding in December, Fox was born in January. But NOT because of him. Sadly, because my body was failing. I had to go in for Non-stress tests every week, and the first one I went to they noticed my blood pressure was SKYROCKETING. This was on Friday January 24, and I was only 28 and like 5 or 6 days pregnant. My ankles were swollen to shit, and they grew concerned that I may have developed preeclampsia. So here I was, being admitted where they planned to keep me until 34 weeks where they would take him out then (because oh, forgot to mention, two weeks prior they saw that my umbilical cord wasn’t transferring nutrients to him anymore and his abdomen wasn’t growing but his head still was and I had a LARGE amount of amniotic fluid build up in my body, hence why my 4’10, average of 115 lb ass was now weighing 157). So I’m admitted into the special care unit and then move to labor and delivery, as they gave me high blood pressure meds that calmed my body down.

Well then, Sunday comes around and I wake up around 1 am Monday to my nurse holding the monitor me and looking scared. I asked what’s happening, and my throat is rattling like crazy. Other nurses begin to rush in where they inform me that Fox’s levels are dipping because my body wasn’t doing well. Remind you, I was on percocets and loads of other medicines so I have a very hazy memory of most of this. But then they also discover fluid had developed on my lungs. And my preeclampsia basically could have killed me. So I call my husband, who’s at home with our animals and he rushes to the hospital, where they take me back into OR and put me completely to sleep, taking Fox out at 2 lbs & 3 oz at 29 weeks pregnant via emergency c-section, and then he ended up staying in NICU for 87 days, finally coming home April 23, 2020. They informed me that the only reason he had to come out because of me and my safety as they feared for my life.

After this, I was told that my chances of getting preeclampsia are high if I were to get pregnant again, and that could be life threatening to not only me, but the future baby’s life as well. But then the fear of me getting pregnant with yet another boy, and him having a very high chance of having hydrocephalus or other issues, it all just became clear to me. My body is not meant to have more kids again. On top of my Crohn’s Disease that hit me like a brick fucking wall after having Fox and being practically in remission my whole pregnancy, I knew I just couldn’t put myself through it again. But I also knew, there was no way I could handle life if something were to happen to a future baby of mine. After doctors advising me of my safety and my baby’s safety, and of constant discussions with my family, I knew the best choice would be to just be done with it. Because I know one day, when I want a child again, I will 100% adopt, as there are so many babies in this world who need homes and I have one to give.

Now, you’ve made it this far, don’t back out just yet! I’ve got some information for you.

Salpingectomy- what?!

So what the hell is that big word I just said? It’s a tubal removal, baby! If you only have a partial tubal removal, you have a slight chance of still getting pregnant, as 7.5 women out of 1,000 have still gotten pregnant. But if you have both tubes removed, you can only get pregnant through IVF. Even though there is a rare case of a woman getting pregnant without any tubes, which is crazy. But anyways, Salpingectomy is the surgical removal of one (unilateral) or both (bilateral) fallopian tubes. Fallopian tubes allow eggs to travel from the ovaries to the uterus. A partial salpingectomy is when you have only part of a fallopian tube removed. http://healthline.com

http://drtarunagarwal.com/lap-salpingectomy.php

I found out about this procedure, which is an alternative to getting your tubes tied, by my OB who prefers this method compared to getting your tubes tied. So instead of going in and burning the tubes (or whatever they do these days) he goes in, for me laparoscopically, and completely cuts your tubes out, removing both of them entirely. There were three small incisions made in my abdomen. Two on the lower right and left side, and one on the upper left side. The purpose of this compared to just getting them tied, is to reduce your chances of ovarian cancer.

The procedure in total took about an hour to an hour and a half, while I was out completely under, and it took me another hour to just wake up, and boy did I wake up. I absolutely hate surgery and anesthesia. I’ve had a total of seven in my lifetime, starting with getting tubes in my ears at 2 years old, and my past five ones being in the span of 2 years. So waking up, is never a fun experience.

In recovery, I was given three doses of fentanyl, and some norco, which norco does NOT work on me, so they prescribed me percocet instead. I waited in recovery with my husband for about an hour or so until I finally felt ready to go home. So it’s just an outpatient procedure, which is awesome because I’ll pass on the overnight stay in the hospital. The recovery time is up to six weeks and I was told that it will be difficult to walk for the next three days. Being as I just had this surgery TODAY, I can tell ya, this shit is PAINFUL. I also have a really low pain tolerance, and the air from them inflating my stomach, that went up into my shoulders, hurts like HELL and the only way to get it out is to walk around which will cause you to burp. But um, hello, how the hell do I walk around when I’m in this much pain? Because seriously, It’s almost 3 am and I’m still up, in pain, trying to keep my mind off of it by writing this post.

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So here’s some info on getting your tubes tied. When getting tubes tied (tubal ligation), there are a few ways this can be done. And only 1 in 200 women get pregnant after this procedure. Tubal ligation — also known as having your tubes tied or tubal sterilization — is a type of permanent birth control. During tubal ligation, the fallopian tubes are cut, tied or blocked to permanently prevent pregnancy Tubal ligation prevents an egg from traveling from the ovaries through the fallopian tubes and blocks sperm from traveling up the fallopian tubes to the egg. The procedure doesn’t affect your menstrual cycle. https://www.mayoclinic.org/tests-procedures/tubal-ligation/about/pac-20388360

The hardest part of all this, is truly knowing I will not have any more kids. And it’s harder knowing the reason I can’t is because of my body for the most part. But everything happens for a reason, and as I said before, there are so many children and babies in foster care and available for adoption, that they deserve a chance. They deserve a life or some sort of normalcy. So here’s to a future of adopting!