Do UC me

Monday, March 5, 2018 - 11:24pm


Illustration by Betsy Stubbs

At first, I thought my illness was the flu or maybe the dreaded norovirus—nothing out of the ordinary for a college student. But I was in for a rude awakening. Little did I know my symptoms were actually the beginning of an entirely new life challenge I was totally unprepared for.

I found out one year ago these developing symptoms were actually ulcerative colitis, a chronic inflammatory bowel disease that causes bleeding in the digestive tract. I was in the middle of a severe flare-up, meaning the inflammation had suddenly worsened, causing me serious pain.

It took several time-consuming medical tests before my diagnosis. I discovered everyone who lives with UC has a different and unpredictable experience. It is called an “invisible” disease since many people who have it look healthy, but destructive things are occurring on the inside.

It interrupted every aspect of my life during Lent; a solemn season of penance, prayer and fasting, in which Catholics devote their lives to sacrifice. As a result of my new condition, I was about to learn a new meaning of Lent: perseverance.

I have gone to church on Sunday for my entire life, so going after my diagnosis was not an escape for me, but rather somewhere I might be understood and finally comforted. Without a cure or any ability to calm my symptoms, I was losing control over my daily routine. Not that the timing ever would have been ideal, but this also came during a packed semester when I was taking 17 credits.

The first doctor I visited told me I would just “feel better” after taking what was prescribed to me as if it were so simple. I was given several medicines to try, but never found one to subdue my symptoms at any point during the semester.

After grinding through school one day, I remember reaching back out and informing them my symptoms had worsened and I was struggling mentally. A few days later I got a message from a nurse saying, “It takes time.”

I did not have time.

Time, if anything, was running out. It was not just the physical debilitation —– losing over 20 pounds and not being able to eat nutritiously or exercise —– but also the psychological pain that weighed me down. Each day chipped away at my patience, my faith and my will. It was isolating, to say the least.

I could not find any balance and became depressed. Because I was afraid to eat anything, I could not focus and also began struggling in my classes. Skipping breakfast and lunch became a habit as I could only tolerate some soup, juice or salad, if I was lucky. I would try eating something for dinner, but could never finish a full meal.

I was losing touch with myself, often putting on a happy face in public to not worry others. It became a daily challenge to try to hide my symptoms as best as I could in front of my friends, teachers and classmates. If you are unaware of the symptoms of untreated UC, now would be the time to Google it. Needless to say, I was embarrassed and terrified at the thought of being seen as an outcast.

Doing routine things, like hanging out with friends, suddenly became risky. Without warning, I’d rush to find the closest restroom. Upon them asking what was wrong, I tried my best to describe it, but never could find the right words to do so.

As a result, I shut people out and stayed in as much as possible. My mood was enigmatic so I became quiet, frustrated by uncertainty.

My friends and family were supportive and sympathetic. My parents were the only ones I confided many of my thoughts in. This was never an issue. I just never had the courage to tell anybody how bad things really were, not only physically, but also mentally. Nobody warned me beforehand how psychologically draining this could become.

I asked myself, “Why now? Why Lent?”

In my frustration, I swore both at myself and at God. I thought, “How could you do this to me now?” Though it was upsetting to do so, it also felt liberating, like a weight had been lifted off my shoulders. At first, I would try lying to myself, thinking everything was fine and then doing something destructive like going out at night with friends.

I quickly learned instead I had to feel all of my emotions and express them. I was reminded no matter how you feel, you have to be honest with yourself in a life of faith. This would help me avoid doing things that put my health at risk and subsequently allowed me to move forward.

I still kept my anxiety to myself, though. Moments of comfort, or freedom from isolation, came during mass at St. Thomas, where I heard biblical stories of hardship and determination and prayed alongside others. It gave me the courage to believe things would get better. Quite honestly, it gave me the little bit of the hope I needed to make it through the week.

My symptoms were still damaging in the week leading up to Easter, and none of the medicine I was taking helped. Thankfully, though, it was the end of the semester; I didn’t have to drop any classes and I could go home.

Once I moved back home, I was abruptly hospitalized, making me realize just how defeated my body and mind really were. I was allergic to one of my failing medications, causing painful acute pancreatitis and forcing me to spend three nights in the hospital. The doctors told me this only happened to around 2 percent of people who took this medicine.

Despite this setback, stability returned to my life after beginning treatment on a new medicine. It successfully suppresses my symptoms, and I receive it every two months through an hour-long infusion.

I no longer had to rely on a clear liquid diet. Instead, I could enjoy real food and slowly ease myself back into working out. Though I have yet to regain most of my lost weight, I feel normal again.

By May, Lent was over, and I was beginning to feel relieved. For the first time in what felt like forever, I was comfortable and could breathe easier. I could actually see the beauty in things again, rather than having to constantly worry where the closest bathroom was.

Today marks a year since my symptoms began, and Lent has again returned. Despite the vast improvements in my health, it is still a challenge for me to find everyday balance. I struggle when symptoms unexpectedly resurface and remind me I still have limits and must eat only certain foods, take dietary supplements, probiotics and receive infusions to keep my body from returning to a damaging state.

Though I am still unsure how or why this all happened, I am more honest with myself now. I cannot take anything in life for granted and must take my health very seriously; doing everything I can to avoid any future setbacks. I have come to terms with knowing I will live with this affliction for the rest of my life.

I recognize now the psychological toll this experience has taken on me. Looking back, I wish I had done more for my mental health rather than allowing my isolation and pride to prevent me from getting the help I really needed. I have been fortunate to join the Crohn’s and Colitis Student Initiative, which promotes awareness of inflammatory bowel disease and its effects so students can feel more supported on campus.

Staying faithful and being honest includes knowing your limits and recognizing when things are wrong. Especially when you yourself are wrong. It also means not being afraid of what people might say and, above all else, not lying to yourself. After all, this is what Lent is all about.

I know now better than ever that making it by in life is not the difficult part. Overcoming not just physical, but also psychological hardship is the difficult part.