Pete Stavros' Story
Fighting IBD is a Team Effort
My story begins on March 21, 2011, when I was rushed into an empty operating room late at night as a surgical team scrambled to come together to remove my colon and replace it with an ileostomy.
Well, my story really began three weeks earlier, when I was diagnosed with ulcerative colitis. Actually, it began even before that, on Valentine's Day. My wife, Christine, and I were planning to celebrate quietly, with a bottle of wine and a heart-shaped pizza, when I started to feel sick. We had to postpone our Valentine's Day plans ... for a year.
While my case was drastic, my story is probably not unlike other stories from the 1.6 million Americans affected by IBD. However, this is not only my story because Christine has also suffered from colitis.
Christine was diagnosed a few years before me, shortly after we were married. Back then, neither of us had any idea what this was, figured she had a bad stomach ache, or food poisoning, or "a bug" that was making the rounds. But when the symptoms - cramping, nausea, and diarrhea - persisted and grew worse, we feared it was something serious, and soon learned firsthand of the unrelenting nature of this disease.
I accompanied Christine to many of her doctors' appointments and more scopes than I thought someone her age should have to endure. I sat up with her at night with a heating pad over her stomach to try and dull the pain of the debilitating flares. I watched, helpless, as each pill or shot or other such therapy failed to ease her distress. We had known, without really discussing, that removing the colon remained a possibility. We just never imagined it would be a possibility for me.
Eventually, after a change in doctors and some experimental treatments, and finally landing on the right combination of medicines, Christine was able to control her colitis and has generally remained in remission. I was not as fortunate. My health declined rapidly. As I lay there in that empty operating room on that late night a little more than a month after first getting sick, it was a foregone conclusion that my colon would have to go.
During the week in the intensive care unit, I was forced to confront my new reality: being a 44-year-old previously healthy person - I had completed marathons and triathlons - with an ostomy bag and a body that no longer did what it once could. I even had to relearn how to walk because my feet and ankles had become virtually immovable, grotesquely swollen with fluid from the edema brought on by the damage to my kidneys from my leaking colon. The surgery had also torn into my core, leaving me with a gaping belly wound that the doctors allowed to heal from the inside out due to the threat of infection.
But the biggest challenge in the beginning was grappling with this stubby, earthworm-like nub of small intestine protruding from my waistline like something out of a low-budget zombie movie. Okay, that’s an obvious exaggeration, but that was how it seemed to me at the time. My stoma had a mind of its own. It spat and sputtered and grumbled, and filled the ostomy bag that was taped and pasted and strapped down over with the most vile, noxious concoctions. Yet as gross and disgusting as I felt, and as angry as I was with my plight, I was also lucid enough to be grateful as I understood that this very odd, very unconstrained chunk of what remained of my guts was the reason I was still alive.
In the months that followed during that tumultuous year, I worked and pushed myself back to being well. "Baby steps" was my mantra. I still had my share of setbacks and disappointments. Each surgery seemed to knock me back. My body continued to ooze out stuff and make ridiculous noises and hurt in the strangest ways. And I always felt sick, even on my better days.
I turned to what I knew best to motivate me, treating my recovery like I would a race. I maintained a steady pace, adjusted to obstacles and changes along the course, and visualized crossing the finish line even though I didn't know where the finish line was. I also relied on Christine, as she was everything, from caretaker to nutritionist to number one fan, spurring me on as she had done at Heartbreak Hill during the Boston Marathon the day before I proposed.
In the end, my surgeon put everything back inside of me that belonged inside of me, and he hooked me up with a new digestive system via a j-pouch. I still get sick occasionally with pouchitis. I take medicine and probiotics. There are foods I avoid, and different eating habits I've had to adopt, and other changes to my body, and my life. But I'm not complaining.
Through our involvement with the Crohn’s & Colitis Foundation, and particularly Team Challenge, Christine and I have seen the disruptive and devastating effects colitis and Crohn's can have on individuals of all ages, across all spectrums. But with the suffering, there is also hope - hope for new treatments; hope for new drugs; and hope for a cure. It is the reason I have chosen to share my story, our story to raise awareness of this disease and to lend support and encouragement to others facing what Christine and I have faced. I learned a lot during my illness, not the least of which is that there are people who understand, and who are eager to assist, which, some days, those especially difficult days, can make all the difference.