Ostomy
Liz Hiles, Urostomate since September 2016 due to Bladder Cancer
I have been in the ostomy community for five years now. I have seen a lot – in person and virtually. I cannot even begin to tell you how many times I have seen people in online groups completely freaking out over the idea of having to live a few months with an ostomy – let alone the rest of their life.
Look, I get it. Getting that kind of news is NEVER pleasant. I mean, you don’t hear little kids waking up in the morning and saying, “Mommy, when I grow up, I’m going to have cancer and an ostomy” or “Daddy, let’s go get matching ostomies since we both have IBD.” That is not reality. Getting that kind of news is something that drops you to your knees and shakes you to your core. However, I think we all need to remind ourselves to STOP and BREATHE DEEPLY! Then, remind yourself that your life is not over with an ostomy.
I cannot help but wonder how these people would respond if they were told they needed a pacemaker for their heart or a glucometer for diabetes. Would they really be *that* dramatic about it? Probably not. I mean, really, an ostomy is just a medical device like a pacemaker or glucometer. It purely exists to allow you to live a longer, healthier life by aiding you in taking care of your body’s needs when your body is not able to take care of those needs on its own.
In 2016, after at least two years of increasing symptoms and the medical professionals not believing that I was experiencing the symptoms I was actually having, I was smacked in the head with a Stage III-b bladder cancer diagnosis with a T4 tumor partially blocking my left kidney from draining correctly and growing through my bladder wall, starting to attach to my cervix. I was 40 years old and had just been handed a diagnosis I didn’t even know existed and typically happened to old, chain-smoking white men – a description that did not fit me in any way, shape, or form!
For a few years before my diagnosis, I was ironically working in a pediatric GI office as an administrative assistant. When I was informed that I was going to require a bladder diversion, that did not phase me. I agreed to the radical cystectomy so quickly that my doctor thought I didn’t understand the severity of the situation or the type of procedure he was suggesting. He might as well have offered me a second cup of coffee because I quickly and simply said, “Okay. When can we schedule?”
His mouth hit the floor. I had been dealing with cancer and didn’t even realize it for two years. I was constantly in discomfort and pain and couldn’t even sleep through the night. I was utterly and physically and COMPLETELY exhausted. I wanted to be done with it. I wanted cancer gone and to move on with my life. Honestly, I was more upset about needing chemotherapy than I ever was about having an ostomy. I knew that I could have a great quality of life for a very long time with an ostomy, but without one – I was going to be dead.
I wanted to live. I was not ready to give up on my life.
Before I panicked, I made myself STOP and BREATHE deeply. I called some friends, spent time with them, laughed and made some perfect memories. Then, I got my game face on and prepared to kick cancer’s A$$!
The first year was the roughest, but I got through it and have slowly been getting back to everything that I love and have wanted to do. I choose not to waste time complaining and lamenting about what my life was like before. My face is turned towards the sun. I’m out living life and I don’t give a damn who knows I have an ostomy or not.
My ostomy saved my life, it didn’t end it, it SAVED it. If you don’t like it, allow me to show you the door!
Liz Hiles resides in her hometown of Cincinnati, Ohio. She was diagnosed with Stage III-b bladder cancer in August 2016. She had a radical cystectomy with radical hysterectomy and stoma placement for a urostomy in September 2016. She has been sharing her story and advocating for AYA cancer, bladder cancer and ostomies ever since.
