By Sara Ghassemzadeh
Before I start, I just wanted to take a moment to thank everyone who read my first post. The feedback that I received (on social media and privately) was so wonderful and overwhelming, and it meant the world to me. With that, I’m excited (and also a little nervous) to share with you my next post.
I’m going to be totally honest with you.
People who don’t know me would probably describe me as a “chill, go-with-the-flow” kind of girl.
This is a blatant lie.
I must be in control at all times. I could go into detail about the wide variety of ways that I micromanage everything, but I feel they will slowly reveal themselves through this blog. Instead I leave you with this: if I am not in control of the well-orchestrated, finely-tuned machine that is my life, I will combust, and that is a promise.
I was first diagnosed with Crohn’s in May 2014, right after I had finished moving into a new house near my school, started working in a neuroscience research lab, and was taking organic chemistry and behavioral statistics (was still on a premed kick at the time). 100% of my life was consumed with things unrelated to Crohn’s Disease, and it was going to stay that way.
I took my Entocort every morning, and life was great.
My delusional motto that summer, adopted primarily to assuage the concerned looks of my loved ones when they found out I had Crohn’s went as follows:
Yes, I have Crohn’s, and no it doesn’t interfere with my life at all! Yeah, life is pretty much the same, and it’s awesome; I love living in New Brunswick. Yeah, organic chem is horrible, but when it’s over I’m gonna party!
Crohn’s Disease is not a digestive disorder. It is an autoimmune disorder. Just for reference, other diseases listed as “autoimmune disorders” include, but are not limited to: Lupus, Multiple Sclerosis, Rheumatoid Arthritis, and Grave’s Disease. Although Crohn’s Disease is not deadly, when unmanaged, its complications can ultimately lead to death. I failed to understand this in my la-la land of “I have a stomach ache but I’m okay”.
My month of “feeling great” came to a screeching halt about halfway through June 2014. That’s when the pain started.
I am truly in awe of the fact that I am about to talk about about shit coming out of my actual asshole in graphic detail, knowing full-well that my family, friends, boyfriend, coworkers, classmates, social media acquaintances who are sort-of-friends-but-wouldn’t-publically-acknowledge-me, and even random strangers will be reading this.
Whoever you are, if you are still reading this, buckle up. You will never look at me the same way again.
It started with this aching pain every time I went to the bathroom. I quickly dismissed this as a side effect of diarrhea, a symptom I had grown very accustomed to. Over the course of two weeks, this mild pain evolved into quite possibly the worst pain I have ever experienced in my life. I could not move; attempting to move literally felt like someone was twisting a serrated knife inside my asshole. I was running a 103 fever and going to the bathroom like I had dysentery and having that food immediately exit my body in the most painful way imaginable. Even without eating, I was still running to the bathroom 10 times an hour, while excreting substantial amounts of nothing but bile acid.
I had developed a perianal abscess, an infected pocket of skin that was filled with pus. That’s why I had the fever, and why I legitimately could not move without feeling like I was being forced through a medieval torture device by Jigsaw.
When I wasn’t practicing for my upcoming role in Saw VIII, I was binge watching 30 Rock and learning about stereoisomers like nothing was wrong. Then, I would ride the empty summer bus to my research lab in the fetal position, trying not to cry or think or breathe as the bus driver decided to use the ride as an opportunity to speed directly into every pothole Rutgers University had to offer.
Like I said, totally cruising along. Crohn’s was not going to get me down.
My mom finally stopped by my house in New Brunswick and was appalled at the state of disease in which I had been “functioning” and I went to my home-away-from home: Mt. Sinai Hospital on the Upper East Side of Manhattan.
Shortly after my arrival, a nice man whose actual name is failing me but for all intents and purposes was Keanu Reeves (Bill and Ted’s Excellent Adventure and NOT The Matrix) kindly informed me that I was going to need surgery. Then my gastroenterologist told me I was going to need surgery. Then my surgeon told me I was going to need surgery. From what I could surmise, I was going to need surgery.
Somehow, I had kept it together throughout the entire process. Everything was great – in fact, I had been in touch with my professors, explaining that I would still be able to take my behavioral statistics exam later that week.
After you get surgery on your rectum/anus/anything involving your bowels, your doctors tell you three basic things:
- You need to try and pass gas. This is to ensure that your intestines are contracting regularly. Some patients will develop an ileus after bowel surgery, when peristaltic contractions temporarily stop and chaos ensues.
- You need to try and walk around. This activity is apparently encouraged to stimulate bowel movement. I can promise you that this ten foot crawl across your room and then back to your bed is nothing short of demoralizing.
- You will temporarily lose control of your bowels, and it will be painful. This means exactly what you think it means. If this means nothing to you, you’re about to find out.
Later that day, I finally tried to walk around, like Keanu Reeves kept fucking telling me to (“Did you pass gas yet? No? You should really try.” PLEASE SHUT UP I WILL DO IT EVENTUALLY.)
I stood up, and attempted to walk, and felt like I was going kinda/sorta/maybe pass gas.
Hey, this is awesome! I’m better already. Maybe I can go home and take my Stat final. I could really go for some pizza right now.
But I didn’t pass gas. You know what happened? I shit myself.
There was no one in the room but me and my mom, and yet it was one of the most humiliating experiences of my life. I had lost control, literally. And for the first time, I felt the gravity of my situation. Everything wasn’t okay. I was sick, and I had a chronic illness, and it just wasn’t okay.
“What happened?!?” My mom looked up from her phone and immediately rushed to my side. I burst into tears.
“I pooped my pants, and I don’t know what to do.” I wailed, collapsing back onto the bed in pain and disgust. My sobs deepened as I realized that my sheets were probably soiled as well and Keanu Reeves was going to have to get involved in this which meant our wedding was most likely off.
My mom couldn’t help herself. She took one look at me and burst out laughing. Before I knew it, I was laughing too. My mom and I laughed as she helped me to the bathroom and a patient care associate came to help me clean up and said that this was a good thing, because it meant my body was recovering and my bowels were moving. Oh they were definitely moving. The horrifying realization that I had shit myself and was literally sitting at rock bottom became funnier and funnier to me.
I am not a perfect person. There are many moments where I feel powerless and weak and I wonder if I’m ever going to feel like a functioning person. These moments happen even today.
It wasn’t the first time I had lost control of something in my life, but it was the first time that I was able to truly find humor in it. And if I could laugh off shitting my pants in a public place, I could definitely find a way to come to terms with my Crohn’s and all of the perks with which it came.
My first week at Mt. Sinai Hospital drew to a close. I had a few minor complications from the surgery that resolved themselves during my hospital stay. I had showered once over that 7-day period. My elbow length hair had gradually formed a single knotted mess. I left the hospital with a new medication in my battery, a biologic called Humira, which I had to inject into my thigh once every 2 weeks. Humira is kind of like an Epipen except it feels like battery acid as it seeps into your body.
My doctors were optimistic that I would continue to recover, but warned me that there was a good chance I would develop another abscess (I did) and that the Humira was not a permanent solution, and could potentially wear off (it did), and that when it did wear off I would end up having another flare and end up in the hospital (10 times) and would potentially need a resection surgery (Happy Cinco de Mayo 2015).
I had finally accepted that this was my life now, but it wasn’t a death sentence. It was going to be okay.
That’s my lesson for this week:
The only thing you can truly control in this life is your attitude. And it makes all the difference.