Stephanie Crowe: In Her Own Words
- By Stephanie Crowe / Photograph by Dana Johnson
"Life is not measured by the number of breaths we take, but by the moments that take our breath away.” – Anonymous
Since the age of 8, I’ve had many moments that have taken my breath away – some wonderful, and some petrifying.
For most 8-year-olds, their biggest worries are having to go to school every day and summer flying by much too quickly. When I was 8 years old, I had my first colonoscopy. It was the first in a long line of procedures, tests and surgeries I’ve had to fend off the looming threat of colon cancer.
My biological father had familial adenomatous polyposis (FAP) – a hereditary condition that causes numerous polyps in the colon and rectum. If not treated, nearly all FAP patients will go on to develop colon cancer. When he was in his early 20s, my father had surgery to remove part of his colon. He didn’t stay on top of his follow-up care, and around the age of 35 he was diagnosed with colon cancer.
By age 8, I was already showing some symptoms of FAP (passing blood and slight bowel changes), so my mother set up the appointment for my first scope.
Thirty-five years ago, hospitals were not as child-friendly as they are today. I didn’t understand why the nurse and doctor were doing such hurtful things to me. I remember hearing the doctor apologize to my mother about having to use a rigid proctoscope. It was the only one they had; there were no pediatric-sized scopes.
The doctor saw what he described as little hobnails in my colon. While the polyps were very small, my colon was carpeted with them. The doctor recommended that I be monitored because he felt I was too young for surgery at that time.
Countless hospitals, scopes and opinions later, I was officially diagnosed with FAP
at age 12. And just before I turned 15, my entire colon was removed.
I recovered very quickly after my surgery. When you are young, it is amazing how fast you bounce back. Other than my new “battle scar” and my biannual scopes, I was a normal teenager. No one would guess that I had had my colon removed. It didn’t slow me down.
I now realize that we had no idea what having FAP truly meant and no idea what was to come. As far as we knew, we had done the hard part with my colectomy. Now it was just a matter
of the inconvenience of my scopes to check my rectum for polyps. It was just two days out of every year. That didn’t sound so bad. Little did we know what was in the future.
At age 21, I got married, and five years later, Bennie and I were blessed with our beautiful baby boy, Zach, who was delivered by Caesarean section. We were so excited to be parents.
But not long after my C-section, I noticed that my scar
didn’t look quite right – a lump had formed in my scar line. My OB/GYN thought that it was just scar tissue and that we could handle that in the future when I had another child. But after two-and-a-half years I finally put my foot down. I knew that something was wrong.
I’ll never forget the day I received the call from the general surgeon to tell me that I had Gardner’s Syndrome. I quickly told him that he was mistaken, that I had FAP. He told me about Gardner’s Syndrome – that it was a variant of FAP, and in addition to forming polyps in my colon, I could (and had) formed tumors in my abdomen. The abdominal tumors I had were “desmoid” tumors, which are benign and locally invasive but do not metastasize. Even though these tumors don’t metastasize, the destruction they can cause to vital organs can be life-threatening.
I thought I had known what FAP was – just polyps in my long-gone colon and now occasional polyps in my rectum. Not a huge deal, or so I thought. Now I was finding out that it was a much bigger deal.
I felt like my world had been turned completely upside down. Learning what this disease truly was brought me heartache because we had a small, precious toddler by now. Every time someone would tell me how much he looked like me, I would say a silent prayer that looking alike was where it stopped. I remember praying that I would take any surgery I had to if my baby could be OK and never have to go through this.
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