My Thoughts on Raising Ostomy Awareness

Ironically, when I received my bladder cancer diagnosis, I had already been advocating and doing awareness campaigns around the topic of ostomies through the position I had at the time. I was an administrative assistant for doctors who saw a lot of ostomate patients. I was very aware of ostomies and had no hesitation in agreeing to the procedure.

A different kind of apprehension

Honestly, I was much more upset about the prospect of chemotherapy than I ever was about losing organs and living with a medical device for the remainder of my life at 40.

Even though I was mentally prepared to get and accept my ostomy, I still didn't realize just how much of an adjustment to and affect my life until after my procedure. My first Ostomy Awareness Day was spent in the hospital, post-RC. It was readmittance due to complications. I honestly don't even remember it much.

I share my bladder cancer story because...

The opportunity to share my story and raise awareness of bladder cancer and ostomies have been a crucial part of my journey. It took me 2 years of trying to get help after experiencing symptoms even longer. At the point of diagnosis, I was in a critical position. It was either get a diversion or, quite simply, die. I wasn't ready to die.

I utilize most opportunities to raise awareness regularly by sharing my story and advocating for myself and others. To me, it just makes sense.

I never want others to experience the things I did, so I share my story.

I don't want people to feel like their lives will be over just because they require a diversion, so I share my story.

If we remain quiet, oncology industries will not change how they treat bladder cancer or ostomy patients or put money into research. They will assume that what they are doing is acceptable, so I share my story (and my opinions).

Sharing my diagnosis

Three days after I learned my diagnosis, I very publicly shared my news on social media. Awareness was a natural part of my journey from the very beginning. Based on the amount of shock, misinformation, and stigma I have encountered about ostomies and other diversions, I knew from early on that there was a lot of work to be done. I have remained steadfast on that point.  I never felt like there was an option for me to keep my journey to myself.

Sharing my story is part of my journey. I am proud of all I have survived and how well I have adapted to life with an ostomy and without a bladder.

The power of sharing

It breaks my heart when I hear that people are ashamed of it or afraid to share it with their significant other. There is nothing to be ashamed one!

I mean, you don't hear from little kids that they want to grow up and have cancer or live with a medical appliance constantly attached to their side. None of us wished for, asked, or deserved this. NONE OF US!

What we have done is to make the best of a challenging situation. We adapted to the hand we have been dealt. Were other outcomes possible? You bet, but were they all desirable?

For me, that answer is no.

A cause for celebration

The opportunity for awareness events and holidays is an opportunity to celebrate. Celebrate the marvels of science and the health professions that have enabled us to continue living our lives. Celebrate the simple things, like sunshine and fresh air.

Celebrate being alive.

Raise ostomy awareness: my challenge to you

This October, I want to challenge you to step outside of your comfort zone and celebrate your ostomy, rights, and health by sharing your story, even if that is only with one person.

Take a "Bag?! What bag?!" picture, share information about ostomies or the Ostomate Patient Bill of Rights with the people around you. Be open with a new person about your diversion status and say, "my ostomy saved my life!"

Don't hide in the shadows anymore... Get out and live - CELEBRATE! I am grateful every day for my ostomy and celebrate it every chance I get. I'm so glad that I have it!

What did you do this year to celebrate World Ostomy Day and raise ostomy awareness? Please share your stories and photos with us! Tell us in the comments below, or share your story with the community.