Ulcerative Colitis. It sounds bad, it’s not fun, I’ve never written about it in a public format like this and it’s a part of me.
UC is a chronic inflammatory bowel disease that causes ulceration of the lower intestine. With it comes discomforting inflammation, bloody diarrhea and abdominal pains that knock the breath right out of you. I was diagnosed when I was ten years old. A young case, I knew something was wrong when I bit down on towels to keep from screaming when I passed my bowels and saw droplets of blood expand in the toilet water. I didn’t tell my parents. I’d had severe asthma as a child and hated hospitals, IVs and tubes. When I was in the hospital, people seemed sad and I didn’t want to see anyone cry. Especially my mother. I’d only seen her cry once or twice, usually it was just tears welling up that never fell—but they were the most powerful, because I knew if she was crying it was really bad. Being a nurse, it didn’t take my mother long to figure out something was wrong. I’d lost a lot of weight and didn’t have my usual energy, so she took me to the hospital.
After the diagnoses began the treatment of steroids and anti-inflammatory drugs, along with monthly blood work and visits to Albany Medical Center. I was seen by a pediatrician who mainly worked with cancer patients, so most of the kids I got to know where undergoing chemotherapy. “It could always be worse,” my mother would frequently reflect as we drove home. I’d nod and gaze at the corn fields and dairy cows. Along with the medicine, my mother put me on a strict diet absent of flour, sugar and dairy to reset the microbes of my gut. In hindsight, it made me much stronger. But, in the early months of treatment I hated the way my body felt, the medicine I had to take that made my face and stomach bloat and the sugary food I couldn’t eat. When I was upset, I’d ride my bike along the rutted tractor lanes until I got to the creek. Then I’d throw my bike to the side, pick up large rocks and chuck them into the swift current. I’d hit sticks against the trunks of trees until my cheeks were hot from sweat and tears. I didn’t want to be sick. I didn’t want to die. Though the diagnoses of ulcerative colitis is rarely a fatal one, the risk of colon cancer later in life is a real concern. And those kids sitting next to me in the waiting room had cancer. They had what could be worse. Needless to say, it was a lot for my young mind to process. Thankfully, I had a strong support system around me. As I got older, the flare ups were less frequent.
Then I had a bad one at the age of 16 that landed me in the hospital for five days. It was the start of our varsity soccer preseason and I ran around the field once before doubling over and laying in a fetal position. The coach called my mother and she took me to the emergency room. With a temperature of 105 and serve abdominal pains, I was almost wheeled in for an appendectomy before the charts came back to reveal no swelling of my appendix. On a morphine drip, the world around me became fuzzy.
“She has ulcerative colitis,” my mother kept repeating while the doctors pondered over my test results, searching for a virus- or bacteria-caused infection. On the fourth day, my fever broke and a week later I was back on the soccer field. I’d lost fifteen pounds and a good amount of muscle mass in my legs. I pushed myself to get back in shape, eager for the season to begin. The previous season I’d been a first round pick on our league’s all-star team and this year I’d been selected as captain. Our first tournament was at home under the lights and by halftime my legs were fatigued and jelly-like. An act I’d never committed before, I put up my hand to be subbed and sat on the bench for the second half. We won the tournament and yet I was heartbroken. At home, I peeled off my cleats and shin guards and curled up on my bed. In my room, posters of Mia Hamm, Michelle Acker and other members of the US soccer team spanned my walls. While I’d been in the hospital, my teammates had brought me a stuffed soccer ball. I pulled it to my stomach and sobbed, my body heaving. There was a knock on my door.
“Beth? Can I come in?” My father asked.
“Sure.” I sat up and sucked the snot back into my nose. He walked across the room, sat next to me and put an arm around my shoulder.
“You’ll get better,” he said. I nodded and bit down on my lower lip.
“Remember, everything happens for a reason and our struggles make us tougher,” he said, and rubbed my back.
“I know,” I sighed. It was one of my father’s favorite lines in the face of adversity and I knew he meant well, but sometimes it wasn’t that simple.
“I just want to play,” my voice broke off and I buried my face into his shoulder.
“Oh, Beth, I’m sorry.” He clasped his arms around me and we rocked side to side while we cried. That fall, my legs didn’t recover and I had a less than mediocre season. Even into my college career, my body seemed to fatigue early and I couldn’t help but envy the strength I’d had before my flare up.
I began hiking in the Adirondacks in 2009 and felt something change. My legs got stronger. I became mindful about the food I put in my body. I gained patience with my UC and found faith in the mountains.
This past fall, I asked my mother if she was comfortable with me pursing higher mountains.
“Yes,” she’d replied without pause.
“Yeah?” I’d questioned.
“Yes,” she’d reinstated with a firm nod. “When you climb, you take better care of yourself.”
And she’s right. When I was younger, I wanted to travel. But lots of my ambitions weren’t acted on because I was afraid to get sick in a faraway land. In college, I was resentful about my condition and intentionally didn’t take my medicine. Today, I tend to everything that’s within my control. I’m not perfect, and I try really hard to maintain regular doctor appointments and colonoscopies, balance western medication with meditation and yoga, keep a regular diet and exercise regiment. And even when I do all that, I know there are hundreds of things out of my control. That’s life. Ironically, having a chronic disease has made me a stronger person. Ulcerative Colitis is a part of me and I take it everywhere I go. And that doesn’t scare me anymore.
It empowers me.