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Taking the Road Less Traveled in My Life With Crohn's Disease

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When I was a junior in high school, my Crohn’s disease was out of remission. I had to go through another upper and lower GI test for the doctor to determine how bad it was. My steroids were increased to 80 mg a day — the highest I’ve been on since I’ve had it. I started to feel better for a while, until my senior year. I was blown up like a puffer fish and had chipmunk cheeks thanks to the prednisone. I was extremely self-conscious due to the weight gain, and my self-esteem was at an all time low. I was pretty much a loner because I was afraid of my classmates finding out that I was “different.” I was afraid of what they might think of me.

There were days when I missed school due to having intense abdominal pain and falling asleep at my desk while doing homework. I’d be in tears because I felt so miserable and knew that a call to my GI would be warranted the next day. Once I felt better, I’d return to my classes and catch up on missed work on the weekends. My main focus was getting through senior year and graduating on time. I never dated but envied my classmates that did.  I thought they were so lucky to be able to have a social life, attend school functions and go on to college after graduation. As for myself, I had no idea what was in store. It scared me.

Over Easter break, I became very sick. I was told I had to have ostomy surgery to save my life since the disease destroyed my entire colon. After he left the room, I lost it. My gastroenterologist saw me crying and told me he ran a support group and wanted me to talk to a couple of female visitors before my surgery. If it wasn’t for these volunteers who answered my questions, I know I wouldn’t have adjusted well to having “Tupperware plastic attached to a shake and bake bag” on my abdomen.

Surgery came and went. While my classmates were being taught in school, the RNs who oversaw my care taught  me how to drain the appliance a few days later. Then the next task was learning how to change the entire appliance. The wound care RN, Mary Lou, showed me a few times until I felt comfortable trying it. Then before being discharged, she told me that I had to demonstrate how I was going to take care of my bag at home.  It took me over 15 minutes to complete the task, but she was satisfied with my work and allowed me to leave.

Recovery time had its ups and downs. I was still getting use to my “new friend” and ran into surprises here and there such as skin irritation and appliance leaks.  I was feeling unhappy at times because I was missing out on several “senior perks” I had looked forward to since the beginning of the school year. My classmates sent a surprise plant and cards on Junior/Senior day to let me know they were thinking of me. That kind gesture really lifted my spirits.

I was anxious to get back so I could go to prom and on the senior class field trip to Canada’s Wonderland. As luck would have it,  I wasn’t able to attend. While my classmates were trying on gowns for prom, I was trying on different wafers that wouldn’t make my skin itch. When they went on the field trip, I stayed home due to doctor’s orders. It just didn’t seem fair. Here I was, taking on new responsibilities that were different from what most teens had and I couldn’t catch a break.

I decided to become a member of the local ostomy support group to meet new people and hear speakers discuss a variety of topics such as diet, humor therapy and exercise.  It seemed overwhelming at first. After a couple of years, living with my buddy “Phil the bag” was second nature to me. I got on with my life but didn’t revolve it around the stoma. My confidence and self esteem grew, plus I’ve learned that society needs to stop judging people on their outward appearance and instead focus on their inner strengths.

I’m thankful the ostomy gave me a chance at living again. Looking back now, I realize that having Crohn’s challenged me with many choices.  I could have taken the easy way out and slacked off in school when I had a pain-free day, but my main focus was graduation. After having more surgeries and flare ups, I could’ve just given up, but I didn’t want anything deterring me from helping others.

When the Greater Buffalo Ostomy Association needed a president to promote the group and bring in speakers to educate members and their family, nobody volunteered. The entire room was quiet. I found the courage to step out of my comfort zone and take on the task. I knew it wouldn’t be easy, but who says life is easy?

I’m reminded of a verse written by Robert Frost in his poem, “The Road Not Taken.”

“Two roads diverged in a wood, and I, I took the one less traveled by. And that has made all the difference.”

Originally published: October 8, 2019
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