I Did Not Choose Surgery; Surgery Chose Me | Kristen's Chronicles
- Kristen
- Mar 3, 2018
- 5 min read
It is August 22, 2016. Cramped into a tiny room with barely enough room for a bed, my parents sit on the side of my bed while I lay, unable to walk. We have been here about a week so far. There is a portable toilet next to my bed because even sitting up raises my heart rate close to 180 bpm. I keep losing consciousness every several minutes, making carrying on conversation with my parents difficult. The GI doctor has just left my room after giving us the heartbreaking news that many of my treatment options were no longer options because we are running out of time. My body is shutting down and waiting 2-4 weeks for a biologic infusion to "maybe" start working is not an option. I am losing a significant amount of blood as my colon continues to deteriorate from severe ulcerative colitis and C. Diff.
After hours of tearful discussion, I page my nurse, asking her to call the surgeon up to my room. About 30 minutes later, a kind-looking man in a white coat comes into my room, sitting at the end of my bed. Through teary eyes, we talk for a long time and I agree that a total colectomy is my only option. He nods understandingly and says he will meet with his team to confirm a date for surgery.
"Please. As soon as possible. I can't go another night like this," I say before he leaves my room. He gives me a hopeful smile and walks out.
It is now August 23, 2016- the day before my surgery. I sleep most of the day, unable to move without severe pain. I look up at the bag of blood hanging above me. My hemoglobin had dropped dangerously low overnight. Later that evening, my mom walks me to the bathroom with tears in my eyes to help me shower before surgery in the morning. I lay awake all night. Even the slightest movement of any of my body sends waves of pain through my stomach and abdomen. It feels like hot knives inside of me, twisting and stabbing.
August 24, 2016. I wake up in an anesthesia-induced haze, pain radiating through my body. I am now in a hospital room, though I am unsure how I got here after surgery. I slowly pull back the covers, looking down at my new ileostomy for the first time. A clear, plastic bag is now attached to my side. I burst into tears. It feels like I have just been hit by a wall. I cry until my face is red and splotchy, unable to believe that this is my reality. I feel so hopeless. Between the tears though, I realize that I am now in a different kind of pain. The pain of my ulcerated colon is now gone, replaced by the pain of fresh incisions and stitches.
The next day, my stoma nurse comes in to see me for the first time to show me how to change my ileostomy bag. Before we even begin, my eyes are already blurry with tears. I don't want to look at it. I don't want to see it. I want nothing to do with my "new" body. I cry through the entire experience, my hands shaking as I attempt to remove some of the bag myself. Eventually I cover my eyes, unable to slow down the tears as my stoma nurse steps in to help me. Every tiny movement of my stoma feels like a knife to my stomach as it tugs and pulls at the stitches holding it in place. After all, it is part of my small intestine pulled through the surface of my abdominal wall. When the bag is finally changed, I pass out for several hours, both physically and emotionally exhausted. Later that day, the nurses encourage me to go for a walk. I have to roll on my side because I do not have the strength to sit up. They grab my arms and help me up, helping to support my weak legs.
August 28, 2016. Tonight is my first solid meal. I order cheese pizza- my favorite. After almost an hour, my little pizza arrives and my parents help me get situated. I stare down at the pizza in front of me. Hunger grips my body, but my mind races with fear. For so long, even a sip of water caused excruciating pain. The tears begin to flow again. After 30 more minutes of more tears and encouragement from my parents, I take my first bite. It may be hospital food, but it was the most delicious bite of food ever.
A little over a year ago, after my total colectomy, I saw something online that I was not quite sure I knew how to respond to and to this day, I am still unsure if I have the correct words to express my feelings. The statement read:
"Surgery is the easy way out."
By surgery, this person was referring to a total colectomy to remove the entire colon and, in some patients with Inflammatory Bowel Disease, completely rid them of their active disease. Surgery for Inflammatory Bowel Disease patients can also mean resections, colostomies, and more.
Nothing about my surgery was easy. In fact, it was the most heartbreaking, overwhelming, and mentally, physically, and emotionally challenging experience of my entire life. I felt hopeless. I felt lost. I felt pure devastation. I did not take the easy way out.
In fact, my only other option was death.
Each and every person who battles these diseases has a unique experience that is unlike anyone else's in this entire world. There is no "easy" route. You are not weak for choosing surgery just as not needing surgery does not mean that your disease is not severe. These disease are life-changing. They challenge every single cell in our bodies and will attempt to drain you of your happiness. Do not let them win. Keep fighting even if the road ahead is long and winding. Bringing others down for needing to have surgery, or even choosing to have surgery, is the absolute opposite of what we should be doing.
I did not jump into surgery. I did not ask for surgery. My doctors did not pressure me into surgery. Up until the very second I was taken into the operating room, I did NOT want surgery. I had surgery because my life was at high risk due to an incurable disease.
I did not choose surgery; surgery chose me.
So please: support each other. Love each other. Acknowledge that every single person on this planet is following their own unique story. Raise each other up. Life is hard enough as it is without tearing others down for things that are out of their control. This is exactly why I will continue to be a voice and an advocate for patients battling Inflammatory Bowel Disease to remove stigmas, open the lines of communication, and ensure that no one feels alone in their fight or is shamed for their journey.
Whether you have or have not had surgery, you are still fighting an incredibly hard battle every single day and that makes you such a strong, brave, and inspiring person.
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