My life with Crohn’s disease, Part 2

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It was the morning of the day we were going to perform our dance for the TV show special. We had to wake up really early and arrive at the Alabama Theater in Myrtle Beach to prepare for our routine. We had one rehearsal that morning and had to wait around for several hours before the actual performance. I remember sitting in a backstage area with my mom that day feeling pretty low. I can’t explain exactly what the issue was, but I felt really tired and worn out.

In my dance routine, I had to do an aerial – which is essentially a cart-wheel without touching the ground – but I missed it in the performance, which was unusual for me. I just felt off. My mom has told me that is the day she looks back at as the start of everything. It’s when we realized that something was not right.
I started back to school just a couple of weeks after the competition. Around that time, the symptoms started to come back and I started losing weight. Now mind you, I was already a tiny kid at that time; I only weighed 75 pounds to begin with. One vivid memory I have is sitting in the back of one of my classrooms shivering uncontrollably because I didn’t have an ounce of fat on my body. Another student told the teacher that something was wrong with me, but of course I just said, “It’s OK, I’m fine,” and that was the end of it.
My parents were in a business at the time that had out-of-town conventions over the weekend and my sisters and I would often go with them since there were other friends of ours who would be there, too. The conventions were often held at the Greensboro Convention Center, which we loved because the mall was in the same parking lot as the hotel! We attended a convention out there over Labor Day weekend, which was about two weeks after school had started. I felt so sick over that trip that I didn’t get out of bed the entire time. I remember laying in the dark all by myself while everyone else was at the mall. Once we got home from that weekend, I didn’t go back to school.

This is the point that we all had the true realization that something was very wrong. We went to see a gastroenterologist who was referred to us in the area. I have some vague memories of being in his office and his nurse giving me B-12 shots. He didn’t want to do a colonoscopy, but a barium enema instead. My mom tells me now that she didn’t know enough to insist on the colonoscopy.
You see, my mom’s dad was diagnosed with Crohn’s disease many years ago. He had passed on when I was only three years old, so I never had an opportunity to speak with him about it. He had a mild case that was kept under control by oral medication, although I’m not sure what medication exactly. This was my mom’s only interaction with Crohn’s disease, so from her experience, she thought that just taking some pills should take care of the issue.
We went ahead and scheduled the enema and later an endoscopy (which is where they put a camera down your throat to look at your insides), since I was complaining of having issues swallowing. Those were supposed to be done mid-September, but Hurricane Floyd rolled through and cancelled our appointment.
We were able to reschedule the enema for the next week. I don’t remember a whole lot about it except for it being horrible! Literally, one of the worst experiences of my life. It felt like my insides were exploding and spilling out everywhere. The gastroenterologist believed it was ulcerative colitis at this point, but did not officially diagnose me, and instead, wanted to refer me to a pediatric GI at Duke Hospital. He already had me on B-12 shots, but wanted to add in Asacol and have me try that for a whole month before sending me to the doctor at Duke. (Little did we know that Asacol is meant as more of a maintenance drug and not usually intended to stop an active attack of Crohn’s disease.) My mom knew a month was too long and started fighting to get me in sooner. She called the hospital every day trying to get the appointment moved and they finally agreed to move it to within two weeks. Even in that short amount of time, my situation had moved past being serious to being pretty dire.