I saw the nurse leave the room for a moment, just as I knew something was wrong. “Help!” I wanted to cry out, but my voice had been taken from me. I started to bang on the chair, hopeful that one of the other patients sitting for their chemotherapy treatment would notice. Thankfully, they did. Within moments the drug being fed through my veins was exchanged with Benadryl as two nurses and a doctor stabilized me. When my breath returned, I used every bit of oxygen I had to cry. I knew this was the end. But maybe, just maybe, it was the beginning.
Within ten days of failing the last line of treatment for Inflammatory Bowel Disease, I found myself counting back from ten on an operating table. I didn’t have much time to feel anxious, scared, or ambivalent, because I only made it to eight before consciousness was taken from me, yet again. The ten days between my anaphylactic episode and my total colectomy didn’t leave me much time to think about what my life would be like with an ileostomy bag. Or how my life would be chronically changed by removing the entirety of my large intestine and rectum. If there was one emotion I felt more than others at that time, it was peace. There is something comforting about being relieved of choice. And if I wanted to live, there was no other option.
When I was first diagnosed with ulcerative colitis at the age of 17, I was told that the only “cure” for my disease was a radical, total colectomy. During the near-decade between my diagnosis and my “cure,” I dedicated much of my time to seeking alternative treatments- acupuncture, yoga, aloe, probiotics, IBD “diets”—in essence, avoiding said “cure.” But when the time inevitably came, I looked forward to my disease-free future. What I hadn’t realized was that my cure would bring with it an entirely new battle.
It has been more than five years since laying on that table in the OR— and I have laid on that table seven more times since that day. Strictures and adhesions- both post-operative consequences of my colectomy- have massacred my small bowel, while enormous cystic structures caused from the same scar tissue have caused extremely complex medical issues including, but not limited to, infertility. Each surgery to correct these life-threatening complications only leads to the formation of more scar tissue- and so the merry-go-round goes round and round. There is no end.
It would be easy to dwell on the fact that I have been hospitalized more than 25 times in five years. Or to focus on recent obstetrical complications that have turned my infertility into sterility. Bowel obstructions appear with no warning, and a newly-acquired arteriovenous malformation could bleed at any moment- both situations leaving me just hours to receive medical intervention. Allowing my unavoidable anxiety over my chronic condition to keep me from traveling, exercising- from enjoying all life has to offer- has tempted me on many occasions. But just as I had only a choice between life and death before agreeing to undergo my operative “cure,” I am now left with that same choice: to “live free or die.”
But the truth is, that the longer I am faced with these insurmountable obstacles, the easier it is to view my life through a more sparkly lens. For five years now, I have been entirely off medication to treat IBD. I suffer from ZERO symptoms of IBD, and day-to-day, I am healthy enough to accomplish whatever my heart desires- including rigorous SoulCycle classes and even competing in a triathlon. Before sterility struck me, I gave birth to a miraculous daughter who fills my days with unimaginable joy and pride. And I am in a fortunate enough position to be able to afford other avenues for building my incredible family. In my humble opinion, feeling sorry for myself would be an incredible waste of time and resources.
Most days of the week, my life is blissful. When those dark days inevitably appear, I use them as a means of making all the other days I am given all the more bright and seeing them as just a little more miraculous.
And just in case you were wondering- seeing as I have enough shit to deal with in my life, I officially have no room at all for the bull kind of shit- and I left any kind of guilt about that behind with the germs, on the other side of those OR doors.