My ostomy is AWESOME.
My name is Amy Oestreicher, and according to doctors, I am a “surgical disaster.” However, at 27, I feel truly blessed. I may not have a stomach, but I sure am hungry for life.
It started in 2005 – a week before my senior prom. It was our second night of Passover, and my stomach started hurting. My dad said it might be gas, but he took me to the ER for an x-ray, just in case. On the way there, my cheeks actually puffed up, soon after, I collapsed, and I woke up from my coma months later. Apparently, there was a blood clot on the mesenteric artery that caused a thrombosis, and when they cut into me, my stomach actually burst to the top of the OR. Both my lungs collapsed, I went into sepsis shock, and I needed 122 units of blood to keep me alive. At 18, I was read my last rites.
When I finally awoke from my coma months later, the doctors finally told me what was going on. I had no stomach anymore, I couldn’t eat or drink, and it was not known when or if I would ever be able to again. What do you say to that? I was shocked – I had been too sleepy to be hungry, but now that I knew what the real circumstances were, I was devastated.
That’s when I made the conscious decision, that as long as this was my life right now, and I was alive and kicking, I would not let myself feel like a victim or hospital patient. My extremely supportive family and I found the humor and fun in everything, and made our ICU stay as pleasant as we could – whether it was setting up bowling pins in the hallway, or serenading the doctors on guitars, my attitude always remained to make the best of whatever circumstances I was dealt.
Since I fell into the coma towards the end of my senior year, my headmaster actually surprised me at the hospital with 8 of my classmates, who I had not seen since I was living my “old life” – and in the middle of the ICU, I had my own personal high school graduation ceremony – a graduation gown over my hospital gown, cap, diploma, and IV pole. It was truly a sight to see as I marched down the unit hallway.
I was discharged a few months after I had come to, and a month after leaving, I got the lead role in a local musical – tubes, bags, and all, AND still not even being allowed to have an ice cube. To make a very long, complicated story short, I’ve had everything in these seven years – 2 different ileostomies, 2 different colostomies, 24 surgeries, countless fistulas, endless setbacks, disappointments, and over three entire years of no food or water. But I never let that slow me down – I got my black belt in karate, taught nursery school, leapt across the stage in “CATS”, started a chocolate business, learned to cook, put up three art shows of my work, wrote over 30 original songs, wrote a one-woman play, started my autobiography, got my teacher certification in yoga, and starred in musicals. My ostomy only inspired me more to keep going, to feel like I was more than just a bag, but a thriving young woman.
Last year, I was finally eligible to get my colostomy reversed. This was completed in a 19 hour surgery, and I was ecstatic. I went to California to celebrate and a week later, I had to be air-vacced to YALE hospital because the wound had opened and I developed three intestinal fistulas. I had to go NPO again and the whole nightmare started once more.
Now, I can eat and drink, but still have one fistula and a colostomy. With my colostomy, I’ve felt very alone. Even though I am grateful for it, because I do have a working digestive system now, and I can eat, I still can feel frustrated, self-conscious and uncomfortable with this “thing” on me, and sometimes I long for my old body – and I time when things were simpler.
So I made a big move for myself. Instead of loathing this bag on me, I decided to make friends with it. I reached out. I inquired about support groups in my area, and realized that there are many people like me. I googled like crazy and learned about people doing amazing things, like hiking the Appalachian Trail, modeling, finding love, and leading perfectly normal lives. My ostomy is just another part of my uniqueness.
I was on the TODAY show with Kathie Lee and Hoda one year ago, and Kathie Lee and David Friedman wrote a song for me called “Still Alive.” This song – two years later – became the final number of my one-woman show, Gutless & Grateful that I wrote, starred and directed in. I am really proud that this dream of mine has finally come to fruition – I’ve performed in theatre all my life, and now after everything I’ve been through, I feel so lucky that I can return to the stage with a story to tell, a message to share, and an even greater gift to give. What better way to go back to my childhood passion than with an autobiographical work that puts my past and present life together? The act has been my therapy, making me realize how lucky and grateful I am to still be here on this earth, and thriving. Colostomy or not, I feel like I’ve found myself again. I am now starting to see this bag as not something that gets in my way, but something that has brought me to where I am today, fortunate enough to be back on stage again, singing about everything I’ve been through, and sharing everything I’ve learned.
Performing my one-woman show for three years has filled me with pride and wonderment that this little dream of mine had finally come to fruition. After my first New York City premiere, I was floating on air. So..After a big milestone like that, some folks would grab a drink at the bar. Some people might bake a cake, someone else might post it on Facebook. Not me. I decided to get another surgery! It was an elective surgery that was supposed to make me “normal” – which was weird because I was never really normal before.
I knew this was a risky surgery, but it was supposed to clear up some leftover kinks I had. So here I am, lying on the geurney in the operating room, when the surgeon bends over me and whispers in my ear: “now are you SURE you really want to do this?”
But I lifted up my head, and with my last ounce of strength, I said: “I just did a one woman show, I can do anything!” But apparently not anything. Three extra surgeries, a few catheters, and two months at Mt Sinai later, I woke up with more problems that I came in with.
And now here I was, set even further back with even more medical complications. I was angry, frustrated, confused, I felt guilty…I felt like I had messed everything up.
They say that everything happens for a reason. But that’s not always true. Sometimes, you have to make it happen. And when you do…wow, life can be good…
When finally discharged from that awful three-surgery marathon, I was discouraged and depressed. I felt lonely, like I had lost all connection to the outside world once again. With a gaping wound that has not healed to this day, all my physical strength depleted, and no road map for recovery, I was too tired to be the feisty and fearless warrior that had enabled me to not only to survive, but to thrive.
One day, a girl named Sara called my mother. She very assertively stated, “I just moved here from the city and I don't know anyone. I grew up with Amy and I’d love to get together.” Still wearing hospital pajamas and barely able to get out of bed, I was in no mood for company. But I reluctantly agreed. Sara popped right over and casually mentioned that she had met her boyfriend online. I thought nothing of it.
A month later, when I could no longer stand my loneliness or my medical situation, I decided to tell myself “I’m healthy enough” and make my first online dating profile ever – in fact, I had never had even a casual boyfriend my entire life! I used the same mentality that had helped me endure everything else: If you act healthy, you’ll feel healthy.
That day, a man named Brandon sent me a message. By the end of that day we were writing novels back and forth to each other – I couldn’t believe how scarily alike we were. We had all the same likes and dislikes, we had visited all of the same places, had the same exact values and family memories, and the same quirky sense of humor! He made me feel like a person again and to realize who I was before the medical ordeal – who I still am. I was so ashamed of the terrible shape I was in after these surgeries that I tried to put off meeting in person – but we did meet…a week later.
Since meeting in March 2013, we were inseparable. I had not felt joy and life within me like this since before I got sick. After so many surgeries, invasions and setbacks, it was hard to feel normal, human, or even real. It was actually hard to know what feeling felt like anymore from all the numb years of being forced to deny my starving body food or water, while nutritional IVs mechanically streamed through my veins. Now, love flowed through me instead – for the first time.
Brandon put me back in touch with me, my vitality, my spunk, my hunger for life. Fast forward through countless hours of stream of consciousness discussions on any topic under the sun, hikes, grocery store strolls (our favorite date night!) dinners, escapades, and everything else, Brandon proposed to me that July ’13 during our visit to his family back in Arizona. And now I’m planning my wedding for June 2015, while in college and doing my one-woman autobiographical show!
Things got even better when I realized just how many ostomates were out there doing even more amazing things. Last year, I was honored by Convatec Program as the Eastern Regional Recipient of the Great Comebacks Award. This ceremony was started by Rolf Bernishke – a former NFL linebacker who kept playing football even with an ostomy. The award took me everywhere from CT to North Carolina to Memphis, where I was able to meet young people still being awesome and living their lives, bag or not!
Throughout these ten years, I’ve been strong, determined, and willing to do whatever it took to stay alive – including denying myself a drop of water for years. I’ve dealt with tubes, bags, poles, you name it. And if this ostomy is all that I’m left with after everything, then I am truly grateful. I call it my Harry Potter thunderbolt-scar: a symbol of strength, courage, individuality, and LIFE. Brandon loves me for me, I love me for me, and I love my ostomy for making this all possible!
You can find out more about me and my crazy journey at www.amyoes.com and my blog at http://www.allspiceandacrylics.blogspot.com/