In 2005 at 18-years-old, a blood clot caused my body to go into septic shock. When I awoke from the coma, I was told by my doctors that I suffered from a ruptured stomach and underwent ileostomy surgery and a total gastrectomy. I couldn’t eat or drink, and it was not known when, or if, I’d ever be able to again.
Thanks to the expertise and innovative thinking of many surgeons from seven different hospitals, I was miraculously reconstructed with the intestines that I had left. Over time, I made slow but steady steps towards recovery and learned to sit upright again. I started to talk again when my tracheostomy healed, and began to write again once my hands were no longer shaky from the medications. With patience, resilience and persistence, the “me” I remembered started to come back — the “me” that 27 surgeries could never take away.
By 2012, I finally felt like I had made a “great comeback.”
I wrote, starred in and directed a one-woman musical about my life called “Gutless & Grateful.” At that time, it felt like I was happy and healthy, but I had an ostomy. I took a risk and underwent an elective surgery to reverse my ileostomy. Unfortunately, this decision turned into three emergency surgeries within eight days, another ileostomy, a nicked bladder, a fistula, and a wound that never closed. It was such an overwhelming and traumatic experience trying to figure out how to put an ostomy bag over a gaping wound. This wound that now functioned as a second ostomy.
A very compassionate ostomy nurse named Tina came to visit me at home.
Previously, I had been unwilling to receive any outside help, but after weeks of stuffing towels around my abdomen, I knew coming to terms with this wound needed a big intervention. This was a very big deal to me. It was acknowledgement that this surgery (that I had chosen) was truly a setback. Tina did everything she could to help me. She dropped off ostomy supplies in my mailbox daily and was determined to help me until we could finally find a solution.
Tina had seen my show in 2012 and knew that I was capable of making another comeback, even when I couldn’t imagine doing so. She nominated me for the Great Comebacks award, a program founded by Rolf Benirschke over 30 years ago that recognizes the inspirational achievements of people who have overcome intestinal diseases, colorectal cancer and other conditions that can lead to ostomy surgery.
Being nominated by Tina changed my life forever.
Through Great Comebacks, I was able to meet other ostomates who were doing wonderful and inspiring things. I met a beautiful fashion model, a dancer and teacher, a nurse, a doctor and inventor, warriors, enthusiastic, vivacious amazing souls. And — something very foreign to me — they were so proud of their ostomies, and grateful that their ostomies enabled them to lead such happy, healthy and full lives.
Call me sheltered or naive, but I didn’t know there was anyone my age with an ostomy! I had never known how to talk about my ostomy. I actually didn’t even know what an ostomy was until I had to have one. Part of me felt like it was not something you talk about. Even though I was never told this, I felt that there was some kind of stigma, like I should be ashamed of having an ostomy. Part of me felt like an outcast, like no one had what I had. So much of my own story took place in secret, unknown to the outside world.
Nobody knew how I’d spend hours in the bathroom changing my bags every morning. Nobody knew I was unable to eat or drink for years. I’d lock myself in my room for every waking hour and journal. I avoided being exposed to the outside world where normal people could eat and drink freely. It felt wonderful to be honest, and to share what coping with my medical situation was like for me. It also felt wonderful to gush about my father, a doctor who worked tirelessly to advocate for my health and save my life.
In 2014, all the Great Comeback finalists met at the Wound Ostomy and Continence Nurses Society National convention in Nashville, Tennessee where our personal videos were viewed by over 500 nurses. The ceremony also showcased how important ostomy nurses are and the impact of their work on real people like me. I cried as nurses came up to tell me things like, “It is so amazing for us to hear the impact we make on people. Thank you for sharing your story.” I owe thanks to my nurses, doctors, family, friends, and my body for the strength to keep making comeback after comeback.