Crohn’s and Ulcerative Colitis, known collectively as inflammatory bowel disease (IBD), do not discriminate between age, race, gender, economic status, or geographic borders. It is truly an equal-opportunity disease!
I was 18, a freshman in college, when I was diagnosed with ulcerative colitis (UC) and was told I was “too young” to be that sick. IBD was an old-person’s disease, my gastroenterologist said.
He was wrong, of course. Because my symptoms were not taken seriously from the beginning, I continued to get worse over the course of the next three years of college. Looking back, I don’t know how I managed to stay on track academically and make it to my senior year, but to me, giving up was not an option. So I kept my textbooks in the bathroom, where we IBD patients spend most of our time anyway, and studied while my disease slowly took over my entire large intestine.
Finally, during my senior year, I sought a second opinion from a GI who took one look at my colon and sent me to a colorectal surgeon. In December that year, while on winter break from school, I went in for an ileoanal pouch surgery, commonly known as J-pouch surgery because it involves removing the diseased colon and folding the small intestine back onto itself until it resembles a J, creating an internal reservoir that allows the patient to poop normally.
Because I was so determined to graduate that May, my surgeon planned to do the procedure in one step instead of the more common two-steps. Unfortunately, I awoke from surgery with a temporary ileostomy bag because my colon was so inflamed that my surgeon had no choice but to create a stoma until I healed enough to undergo the rest of the procedure.
So I returned to college for my final semester wearing an ostomy bag. I went in for the second step of the procedure over spring break. One complication led to another and I ended up in the operating room several more times within 40 days. Finally, I went home with another ileostomy bag.
I was 80-some pounds and could barely walk. Too weak to even shower by myself, I sat on a stool in the bathtub while my grandmother bathed me. I was 21, she was 70.
I had missed the entire second half of my final semester, but still managed to walk across the graduation stage that May. I had to use a wheelchair to get to the stage and arranged to have it waiting for me on the other side, but I was hell-bent on walking across.
A year later, I returned to the operating room where my surgeon was able to successfully complete the rest of my J-pouch surgery. I still struggle with IBD-related issues and my fear is that someday I’ll end up with a permanent ileostomy bag. But overall, life without a colon has been considerably better than life with a diseased colon. And to think – I was “too young” to be that sick.
If/when I do have to go through another surgery, I won’t be alone. I have found an amazing source of support through a mobile app, GI Monitor, lovingly dubbed Buttbook by those who use it. Click here to read more about this fantastic app.
My BB friends range in age from 13 to 60-something and in geography from California to Australia. Like I said, IBD does not discriminate. The individuals I have met through GI Monitor are all truly incredible people who struggle with daily bouts of pain, diarrhea, and other symptoms, and still manage to go to school and work most days. But there is one BB friend who has become my personal IBD hero: Dewey Thom.
Like me, Dewey has a J-pouch and, like me, he was originally told he was “too young” to have IBD. What I admire most about Dewey is the fact that he has selflessly dedicated so much of his time to raising awareness about this terrible disease and to offering moral support to fellow IBD patients. Dewey rarely complains about his own pain and struggles with the disease, but instead focuses on educating and supporting the rest of us.
Currently, Dewey is participating (not for the first time) in the Crohn’s and Colitis Foundation of America’s Team Challenge marathon to raise money for IBD research. Click here to visit the Team Challenge homepage for more information. Or, to help Dewey reach his fundraising goal for the event, and to read more about his personal journey with IBD, click here.