IBD | Ostomy
I am a history buff, an avid reader, a student, and an educator. I also live with IBD. I was diagnosed in July 2018 shortly after returning from a weekend-long graduate school field trip. The trip was exciting but exhausting, so I initially assumed my sudden illness was related to the trip. I figured it was food poisoning or a bad stomach virus. After two weeks, I knew it was something more serious. I went to the ER and was immediately admitted to the hospital. A few days later, I had my first colonoscopy and was diagnosed with severe ulcerative colitis. I felt like my world was crashing in on me. This illness I had hoped would pass quickly would forever be a part of me.
My next two years were filled with lessons about both myself and life. One of the first things I learned is that I needed to let go of the idea of perfectionism. I suddenly had less energy and needed more sleep. I could no longer force myself to stay up into the early hours of the morning to perfect every sentence in a 25-page paper, nor could I fret about preparing the perfect visuals for a presentation. I learned to do my best while simultaneously taking care of myself. For the first time in years, I began joy reading, meditating, practicing yoga, and going for walks. I even started reteaching myself the clarinet. I do not think I would have ventured down this path of self-care and exploration without the nudge from my diseased colon.
Another important lesson IBD has taught me is the need for flexibility. Like most Type-A people, I have always had a compulsion to plan my life to the minute. I had a set time-frame for getting my master’s degree, starting my next master’s program, and securing a full-time job. These plans eroded as my health declined, and I found myself in and out of hospitals. There is no way for anyone to know what their future will bring. It is, therefore, best to make broad plans and be flexible with times and dates. I finally submitted my thesis this summer; it was a year later than I anticipated, but I have made peace.
IBD has also strengthened by empathy by driving home the reality that you never know what someone else is going through. Not many people knew just how sick I was over the past two years. It did not show in my appearance. While I was attending a meditation session late last August, I commented on how I enjoyed meditation because it was a “great distraction from pain and stress.” The older man sitting next to me commented that I was too young to know anything about pain and that I would rethink my meaning of the word when I needed a knee surgery. I know that he did not mean any harm, but his comment was like a blow to the gut. I had spent most of my summer in the hospital on TPN and had recently had my entire colon removed in emergency surgery. My stomach was aching from fresh scars, and I was struggling to adjust to my ileostomy. To the outside world, however, I appeared to be a healthy, abled, young adult. I do not hold a grudge against those who assume I am ‘healthy’ or those who unintentionally dismiss my pain. It is an easy mistake to make. That being said, it is a mistake that I do not want to make. I know that everyone I meet is dealing with their own battles and deserves patience, empathy, and respect. I never assume that someone else’s journey is easy. I also know that it is the small gestures of kindness that make the biggest difference during a hard time and I try to practice these acts of kindness daily.
My struggle with IBD has changed me. I am still the adventurous and lively history nerd I was before my diagnosis, but I have gained a new perspective that allows me to take time for myself and be flexible with plans. More importantly, I have developed a stronger sense of empathy.