Crohn’s is an inflammatory bowel disease which causes inflammation in the gut, intestines and digestive tract. Mostly affecting the small intestine and colon. But, it can affect anywhere from rectum to mouth.
What causes Crohn’s? Well, it’s unknown truly what causes one to have Crohn’s disease. But many believe that it’s caused by a combination of the environment, an overreaction of the immune system, or genetic. The true known cause is a mystery, and sometimes it seems it could just be the luck of the draw.
Crohn’s can lead to symptoms like abdominal pain, diarrhea, fatigue, dehydration, and malnutrition. Some people, like in my case, experience the severe and more ‘rare’ complications, like abscesses, fistulas, perforations, bowel obstructions/blockages, and frequent infections.
Crohn’s is an autoimmune condition, meaning that a person with Crohn’s immune system mistakenly attacks healthy tissue causes inflammation. Basically, the immune system has been rewired to believe that its own body is a foreign invader, and it spends its time tirelessly fighting itself.
How is Crohn’s diagnosed? There are several ways to be diagnosed with Crohn’s.
Colonoscopies
Stool Cultures
Blood Tests
Upper Endoscopy
Biopsies
CT Scan/MRI
Capsule Endoscopy
Upper/Lower GI Series
Some Facts
Now, the real question everyone is wondering, is there a cure?
No, there is no cure for Crohn’s disease. There are only ways to try and achieve remission or alleviate the symptoms. Infusion therapy, biologics, steroids (which cannot be long term as those can cause serious irreparable damage to the body), Medications (like opioids and temporary painkillers). There are surgical procedures done to many as well, including fistula repairs, and the obvious most well known – ostomies (ileostomy or permanent colostomies where the colon is removed). Self care alone can cause some positive change, but is often times not ever enough. As a Crohn’s patient we sadly are often reliant on many drugs as it can often be our only way to function.
As a woman who has had Crohn’s for nearly seven years now, it can be quite frustrating not knowing how or why I developed this disease at just nineteen years old. And it’s even more frustrating when it can seem like there is no end in sight for thronging complications and symptoms. Crohn’s is a spectrum, so while some have mild to moderate disease, and some achieve remission rather quickly, I like many others, have a severe complex and rare case which comes with several hospitalizations and Er visits a year, 20 surgeries thus far, and long term opioid dependency just to be able to experience a pain scale level of 6 on good days. But now, with an Ostomy, we can hopefully begin to see some positive change in the perianal Crohn’s (my fistulas and recurring abscesses) which has so often caused me to have no quality of life.
Patients like myself devote most of our lives dedicated to trying to understand our own bodies, what we can and can’t eat, what limits we have with physical activities, and just figuring out ways to get through each and every day. Advocating for research, preaching awareness, and sometimes screaming from the roof tops for just anyone to listen to us and believe us. This disease can make you feel gaslit, crazy and like it’s all in your head. Finding good, empathetic and validating doctors can also be a major challenge, but once you do, it’s like a weight is lifted off of you, and you can take the load of advocating for yourself off, as your GI should be the one doing it for you.
So as always, if you or anyone you know suffer through this terrible illness, please remember you are not alone. And remind yourself that you are allowed to mourn the part of you that died with your diagnosis. No one expects constant positivity and you are allowed as many bad days as you need to properly heal. Just don’t ever give up. I know it feels as though it’s all you can do, but believe me, there is more to you and your life than Crohn’s. It may have stolen so much from you, but you are in the position to take it all back.
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.
I’ve probably talked about my moon face to every one of my friends and none of them really knew what I was talking about until I explained it.
Prednisone is a steroid that of which will help with the pain and inflammation temporarily while a different treatment plan is underway, usually.
Well, I’ve been on Prednisone since late November, and let me tell you, it’s nice to have some help with the inflammation in my gut, but the constant eating, and changes in my body are driving me nuts.
For starters, I’ve been getting these bumps on my forehead and my shoulders. They aren’t even pimples, just little annoying bumps. Also, I’m almost always hungry, and everything tastes good. I can’t think of a single food I wont eat. And lastly, moon face. While, I haven’t experienced much weight gain except maybe a few pounds, my face has turned into a literal circle. I see myself and think ‘Human or hamster?’ because I look like a little rodent that kids keep as pets whenever I smile. It’s kind of insane and I absolutely hate it. I have an ileostomy bag at the moment, and I’m more insecure and concerned for the roundness of my face and my puffed out cheeks, rather than the bag full of poop on my stomach.
Now, you may think I’m overreacting, but people have actually noticed this change. So figured I’d provide some photos from when I was first diagnosed with Crohn’s in August of 2018 to just a few days ago in January of 2019, for reference.
Now, it may not look like a lot, because it really is just my face that’s gaining the weight, but I mean, COME ON, I totally look like a little hamster or something. And it’s fine, because I know once I’m off Prednisone in a few weeks, it’ll go back to normal, but wowza, gotta love modern day medicine and the lovely side effects!
So when you hear someone refer to moon face, this is what they mean. Medicine can have lots of negative side effects, and it sucks when the thing that’s helping your pain is also the thing making you look a way you don’t necessarily like. It’s hard to be positive or feel good about yourself when you can literally see this change happening right in front of you. There are days I just feel so insecure, whether it’s because of moon face, or the little bumps on my forehead, or the bag, I just miss the confidence I used to have and I’m trying so hard to get it back, but it’s hard when medicine is contradicting you. I just remind myself that moments are temporary. I can and I will get my groove back, I just need to keep patience in mind. Nothing happens overnight and right now my health is the main concern.
But damn, I am SO ready to start feeling AND looking good at the same time. So let’s hope when I get my reversal surgery in March, I will be.
Also, remember, if you have a bag, or moon face, or just anything you feel insecure about, try not to stress too much over the little things. We all are trying our hardest and I know sometimes things like this can be very discouraging and frustrating, but honestly, we all are beautiful no matter what. We all have things about ourselves that we consider flaws, but try to focus on it as a unique part of you. It’s what makes you, you. And we need to learn to just embrace ourselves and love every part of ourselves, because that’s the key to being not only happy, but healthy.
So ladies and gents, embrace that moon face, because it’s the only face you got and there’s no point in dwelling on it!
Crohn's Chronicles 