acceptance,  awareness,  Colorectal Surgery,  coping with flare,  Crohn's,  living with IBD,  Ostomy,  stigma,  Ulcerative Colitis

Metamorphosis

This past weekend marked 3 years since my series of surgeries at the Mayo Clinic in Minnesota. That trial was my greatest test to date. 3 surgeries back to back to clean out remnants of j-pouch, rectum and anal sphincter that left behind a wound the size of a small football. From daunting saltwater whirlpools, Jackson-Pratt drains, Hydrogen Peroxide flushes into my pelvis, a wound VAC and procedures under sedation every other day to clean out the wound. I was on 6 different painkillers and I was barely hanging on for life.

In the months prior, I had drains galore, one from my back down my leg with a bag attached at my ankle, a PICC line in my arm delivering 3 different antibiotics 3 times a day and my good ol’ ostomy. So much to manage and so hard to know which way to turn without pulling a wire or device out. But I was grateful to be alive thanks to all my medical paraphernalia.

Fast forward a few months, my mom and husband sat by my side in my room at the Mayo Clinic as I struggled to not put too much pressure on one side of my body. Little did I know that leaning to my right side would soon give me severe sciatica. But I fought. I fought anyway. I fought through the pain of endless procedures, the misery of showering to clean the wound, the loss of self and the loss of quality of life. And I cried, cried through being violated constantly, screamed in intolerance even though I knew that every poke and prod was for my good. Nightmares and addiction abound, pain management began to wean me from my cocktail of meds. And the pain, oh the pain, left electrical shocks of trauma I’m still recovering from 3 years later.

5 weeks of being in the hospital and my wound was finally only 3 inches deep. The VAC was pulled and I was discharged for my mom and husband to pack the wound for the next 5 weeks.

…Until the doctor found yet another fistula. The 6th one, as if the first 5 hadn’t stripped me of my womanhood and my entire being. Antibiotics were prescribed and I was put in a clinical trial for a very strong biologic for what was considered double the dose at the time.

But I persevered through months of excruciating recovery and physiological dependence to opioids. And the ostomy leaks, the fungal infections and the sciatica that followed nearly broke me. I couldn’t add anything more to my long laundry list of diagnoses.

However, in the midst of this horror, I was able to step out into Mayo’s courtyard arm-in-arm with my mom and the wound VAC attached to me. As I breathed in the pearls of fresh summer air, I took in every ounce of natural beauty I could behold in the middle of urban Rochester. And that’s when I spotted this beautiful, carefree butterfly. And in that moment, I knew I was experiencing my own metamorphosis. I had been released from my cocoon of surgeries and constant suffering to behold this wondrous beauty. Like the butterfly, I too would soon fly and one day soar into a world free of backbreaking surgeries and bowel disease stigmas.

That day 3 years ago I knew the butterfly’s fate was symbolic of mine, to be reborn into something more beautiful than I’ve ever known. Because the worst was behind me. Because for every mountain we have to climb, the Lord bestows upon us a thousand blessings.

Through my pain and misery, my very own metamorphosis was finally at my doorstep. And in that moment, I obliged. I gave birth to a better version of the woman I had known all along. I may have lost some organs along the way but in that moment I was whole again. That day I became the butterfly who decided she would fly again.

And I knew then and there that my comeback would be stronger than my setback.

My name is Tina and I am from the NYC area. My background is in legal and compliance for financial services. Due to the severity of my Crohn's and multiple extraintestinal manifestations, I have been rendered unable to work. I have served as a case study for a number of renowned doctors and surgeons across the country. I hope that the research done on me helps current and future populations of IBD patients. In a world where the #metoo movement has erupted, I believe it is high time for patients like myself to speak up about the ravaging aspects of chronic illness and disability. The intent of this blog is to give those suffering in silence and in shame a voice that creates greater awareness and acceptance of our daily struggles. I own my Crohn's and my goal is for you to as well!