When I was diagnosed with ulcerative colitis at age 6, I didn't know what those words meant, let alone the impact the disease would have on me.
I didn't know it would leave physical – and emotional – scars. I didn't realize that after being extremely ill for the majority of my childhood, I would face an entirely different world of challenges in the form of often-judgmental personalities, daunting tasks and things that would constantly conjure my past. While these scars have faded over time – I’m now 16 – they will always live inside me, telling a story so personal that even those closest to me wouldn’t understand. They do define who I am, no matter what sayings say to the contrary.
Ulcerative colitis is a chronic inflammatory bowel disease that directly affects the large intestine, and disrupts the entire body’s equilibrium.
It is a disease that could be called the most evil of villains. A person could be suffering terribly and you wouldn’t have a clue, as the disease often shows no visible symptoms. Don’t be fooled, though: More than 1 million Americans like me are affected – and counting.
Throughout elementary school, I was devastatingly sick. I had numerous procedures and repeated doses of steroids that made me look strikingly similar to a chipmunk. It's difficult to imagine now that a 7-year-old would be swallowing six large capsules daily – and tracking the number of times she went to the bathroom, day after day after day. That was the easiest of it though.
Middle school is when my disease gained serious speed. It was also the first time I realized there was no way I was ever going to experience life as others do. School became a gruesome place, punctuated by numerous bathroom accidents and severe embarrassment. I wasn’t bullied, but was constantly pummeled by questions about why I was barely at school, or why I got extra time on the rock project. School, however, was the least of my worries; I was focused on getting enough rest and somehow reducing the 20-plus bowel movements I endured each day.
During 6th grade, I experienced pancytopenia – my first emergency situation – in which my bone marrow shut down. My hemoglobin, or blood protein, dropped to a dangerously low level of 4 and I was rushed to Riley Hospital for Children at IU Health in Indianapolis, where I quickly received a blood transfusion. My parents knew something was wrong when my tan face turned ghost white, and I was unable to speak more than a few sentences without gasping for air. This was the first of many emergency room visits. It became a cycle: My colon would torment my body so severely that we had no choice but to seesaw between home and the ER.
For years, I was plagued by symptoms that made life difficult. I couldn't eat. I developed unsightly skin nodules. I had excruciating headaches and unbearable stomach pain. This was my norm throughout much of my childhood, and my poor parents could do nothing but watch me suffer on the couch cloaked in a heavy blanket while the neighborhood kids gleefully played tag in the 70-degree heat.
The night before my first day of high school, I begged my dad for a potent stool-slowing medication so I wouldn't have as many accidents at school. I longed to be normal for just one day; the first day. My dad resisted because this particular antidiarrheal gave me fevers, but then caved because he couldn't stand to imagine the embarrassment I would face if I had multiple accidents on my first day of freshman year.
I started high school weighing just under 60 pounds and with a faint smile. Instead of jewelry, I wore tubes taped to my arm, through which a steady stream of nutrients helped artificially maintain my weight. There was certainly no teasing, but I knew my classmates were eyeing me. I had grown beyond my former ritual of wearing a jacket to hide the “line” in my arm.
Each week, I would go to Riley Hospital to get iron infusions – a place I now considered my second home, where I could visit my second family. Sickness became a way of life. I didn’t know what “healthy” felt like.
Meanwhile, we clung to false, waiting for an elusive cure. We thought we would find a way to finally tame this disease. My family and I battled it for years trying everything we could to spare me from surgery. We tried homeopathic treatments. My mom and I even went to California in pursuit of a treatment center boasting success with natural healing methods. All we gained was pain and lost precious time as weight continued to evaporate from my body. I was practically disappearing. This couldn’t go on.
In December of 2012, I underwent a colectomy to remove my entire large intestine. I remember feeling ambushed by the emotions swelling inside me as I walked, defeated, toward the operating room and looked back one last time to see tears rolling from my parents’ eyes. I woke up a few hours later with a giant tube in my nose and a parched mouth, but couldn’t have any liquids, not even a sip, until at least the next day.
Dazed and barely conscious, I was wheeled to my room: E9235. It was there that I would form an enduring friendship with a nurse, and get a new chance to live. I knew new adventures were ahead. And for the first time in years, I let myself feel optimistic.
I came to the hospital with an irreparably diseased colon and left with an ileostomy – about an inch of small intestine that protruded from my stomach, which surgeons created to help my body rid itself of waste.
When I got home, I felt overwhelmed. Paradoxically, though my colon was what had robbed me of my precious childhood and early teen years, I felt incomplete and uneasy about not having it. The emotional recovery, I recognized, would be much more difficult than the physical. Although in about a week, I was getting used to and enjoying life as I had never been able to before.
After this surgery, I regained my appetite and weight. I began sleeping through the night, a luxury that for so long had escaped me. My body was now getting a chance to grow again. However, this came with its own baggage of ileostomy bag changes to dispose of waste, leaks and strange noises the bag made.
After about a year, I had a second surgery in which my small intestine was built into a j-pouch (mimicking the colon). While I still needed an ileostomy bag, surgeons later re-connected the j-pouch to my bottom, enabling me to gain a bit of the normalcy I yearned to have.
Now, I no longer need to wear the waste bag and am getting stronger every day. But even this new “normal” comes with trouble staying asleep at night and frequent dehydration, since I can’t properly absorb water back into my body – the colon’s job. Infections pop up here and there, and I’ll need to undergo minor surgery frequently to keep my small intestine open, allowing waste to move through my body properly.
Overall, life has improved. I still struggle to understand why my childhood had to be spent mostly in bed or the bathroom – not outdoors with the others – but had we delayed the surgeries, my chance to develop into a normal teenager wouldn’t have been possible.
Through all of these struggles I’ve come to realize the value of life; to enjoy the small things that are invisible to most. Some of the worst situations really are blessings in disguise.
For me sickness is definite but hope will always be infinite.
