How I Lost My Colon, But Regained My Life
On March 21, 2011, I almost died.
That was the day when an x-ray revealed a severe form of ulcerative colitis, a type of inflammatory bowel disease (“IBD”) marked by swelling, inflammation and open sores on the lining of the large intestine, had perforated my colon to the point of disintegration, something I was told only happened in a small percentage of colitis patients, and rarely so quickly — I was diagnosed just three weeks earlier. My body was becoming septic as bile and bacteria were released inside of me, my kidneys and liver were deteriorating, my pulse was racing and my blood pressure was dropping dangerously low. I had already lost fifty pounds, nearly a quarter of my weight, while the doctors tried in vain to stave off this illness with medication that proved ineffective.
That was the day when I was rushed into an empty operating room late at night, as a surgical team scrambled to come together, to have my colon removed and replaced with an ileostomy — a piece of my small intestine brought out through a hole cut into my abdominal wall for the elimination of waste.
That was the day when everything changed for me, when my once strong and fit body — I was a marathon runner, a triathlete, an athlete — became broken and beaten during the first of three such “car wrecks,” my surgeon’s metaphor for the series of grueling operations I would endure in less than nine months, and I began the long and arduous journey to return to normal, as normal as I could hope to be.
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While my case was drastic, my story of battling this disease is probably not unlike the stories of the estimated 1.6 million Americans, according to the Crohn’s and Colitis Foundation (“CCF”), who suffer from IBD. However, my story does have a twist, because my wife and I have both suffered from colitis — I used to say this was “God’s little practical joke” whenever I was particularly bitter during my convalescence.
Christine was diagnosed with colitis shortly after we were married. Back then, neither of us knew exactly what this was, figured she had a bad stomach ache, or a case of food poisoning, or perhaps “a bug” that was making the rounds. But when the symptoms — cramping, nausea, 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 in the evenings with a heating pad over her stomach in a forlorn attempt to dull the pain of the debilitating flares. I watched, helpless, a blend of frustration and heartbreak, as each pill or shot or other such therapy failed to ease her distress. We had known, without really discussing it, 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 upon the right combination of medicine, Christine was able to control her colitis and has generally remained in remission. I was not as fortunate.
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Colitis struck me several years later, on Valentine’s Day of all days, as Christine and I were planning to celebrate quietly with a bottle of wine and a heart-shaped pizza. As it would turn out, missing our Valentine’s Day dinner was the least of our concerns. My health declined rapidly — I once joked with my doctors that I had always been an overachiever — and the different drugs I was prescribed seemed to do nothing but exasperate my condition. As I lied there in that empty operating room on that late night a little more than a month after first getting sick, it seemed a foregone conclusion that my ruined colon would have to go.
Regardless, ever the attorney, I was compelled to plead for a reprieve for this body part that was, alas, too ravaged to remain. So with a resigned “just do it,” I inevitably consented. Hours later I awoke, stiff and motionless and completely dumbfounded beneath a warm blanket of morphine dripping into my vein from the IV stand perched over my shoulder like a cartoon pterodactyl, which was precisely how I saw it, one of many hallucinations during that week in the ICU. It was from that moment that I embarked upon this uncharted, unexpected part of my life.
As I thought about it, with not much else to do in the hospital but think about it, maybe I was fortunate. After all, I did not, as others I have met along the way, have to agonize over the pros and cons of jettisoning a sickly but otherwise functioning colon. The dire consequences of my illness made my decision for me. It was a no-brainer. My colon was leaking like a sieve, leaving me with a “belly full of stool” as one of the surgical residents put it — although to his credit, without cracking any lawyer jokes.
When the effects of the painkillers faded, I was forced to confront my new reality, or surreality considering how surreal it all was: being a forty-four-year-old previously healthy person with an ostomy bag and a body that no longer did what it once could. I had to start with the basics, even relearning how to walk because my feet and ankles, which never failed me, had become virtually immovable, grotesquely swollen with forty pounds of fluid from the edema brought on by the damage to my kidneys. The surgery had also torn into my core and left me with a gaping stomach 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 my small intestine protruding from my waistline like something out of a low-budget zombie movie — okay, not that bad, but that was how it seemed to me at the time. My stoma, as it was called, had a mind of its own, doing whatever it wanted, whenever it wanted. I could scarcely look directly at it, relying mostly on peeks and glances, but I knew it was there, as it spat and sputtered and grumbled, and filled the plastic bag that was taped and pasted and strapped down over it — to try and get the bag to stay put since my skin buckled and puckered at the area of incision — with the most vile, noxious concoctions. I could not believe any of it had come from me, especially given the restricted diet I was on. 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 could experience such a kaleidoscope of emotions — it was the reason I was still alive.
Before long, I grew to accept the new addition to my midsection — although its placement made it a challenge to wear pants, but, again, the least of my concerns. I knew when it slept. I knew when it woke. I knew when I had eaten something it didn’t care for, like the mint chocolate chip milkshake that exited on the express train and resembled radioactive sludge. I cleaned and cared for my stoma, and, since it was only supposed to be temporary, I wondered if I would actually miss it when it was gone.
In the months that followed, in that tumultuous year I had considered lost until I realized how much I gained — in terms of resilience, and empathy, and appreciation for small victories, and restoring my faith — I worked and pushed myself back to being well. “Baby steps” was my mantra. I walked in the driveway until I could walk down the street until I could walk around the park. I trained with mini-weights and exercise bands until I could stand up straight and lift my arms above my head. A major accomplishment was climbing the stairs in our modest Cape Cod all by myself.
It was by no means easy. I had my share of setbacks and disappointments and pity parties, questioning what I had done to deserve such a cruel fate. Each surgery seemed to knock me backwards to square one. My body continued to ooze out stuff and make ridiculous noises and hurt in the strangest ways. I never thought I was progressing as fast as I should. And I always felt sick, even on my better days — spent and empty and just plain sick.
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 on the course, and visualized crossing the finish line even while I didn’t know where the finish line was. I also relied on my support team, primarily 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, as promised, 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” — basically my small intestine pulling double duty for itself and what used to be my colon. I still get sick occasionally, with pouchitis, a sort of holdover from my colitis that attacks the j-pouch. I take medicine and heavy duty probiotics, and green tea extract helps with the inflammation. 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. I can’t complain, certainly not compared to those who suffer continually from IBD, who are in and out of the hospital, who are burdened by mounting medical bills, who must mix and match medications and treatments to find something that can provide some relief since there still is no cure. I am unbelievably fortunate.
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IBD is not an easy disease to discuss, or to admit to having, or to have. Through our involvement with the CCF, from support groups to fundraisers, 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, hope for a cure. It is the reason I have chosen to share my 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 out there who understand, and who are eager to assist, which, some days, those particularly bitter days, can make all the difference.