I have been asked WHY I am so involved in the world of ostomy? After all, there are between 750,000 to a million with ostomies in the United States, and many do not know of another with an ostomy. That is, most likely, because few talk about this life-saving procedure. It isn’t sexy, it doesn’t apply to a part of the body people discuss, and it usually is due to a disease process that can be terribly debilitating, or deadly.
WHY then, do I speak of it, advocate for it, and open dialog around it? Because my goal is to make OSTOMY a household word! I want the next person with an ostomy who calls me, frightened and embarrassed, to be able to end our conversation feeling empowered and prepared to deal with the challenges they will face. I cannot change the reality that there is much to learn and comprehend, and time and practice will be a great aid. But the fear is so often around the unknown because people hide having an ostomy. To that point, when I was a new ostomate, I met a woman at an ostomy conference who asked me why I was attending? My answer was, of course, “because I have an ileostomy and want to learn everything I can.” Her response, “You don’t look like you have an ostomy.” As if that wasn’t absurd enough, she went on to tell me that only her husband knows she has one, as well. She shared that neither her mother, her children, her siblings, or any friends know. “WHY?” I asked. “Because they will never look at me in the same way. I am disgusting!” My heart hurt for her.
Replacing the sense of shame with one of power, gratitude, and appreciation for our ability as ostomates to survive and thrive is my goal. And that comes from recognizing that the alternative is either a shortened life or one of agonizing pain, bleeding, hospitalizations, or frequent surgeries. I am proud to hold someone’s hand as they adjust.
We live in good times medically, with more and more advances every day in the ability to save and enhance life. Today, people with all types of medical challenges wear their scars with pride, and knowledge they are strong and determined to live their best life. Hiding is in the past…no shame or embarrassment! Many, including ostomates, show the world how strong and empowered they are, and embrace their opportunities to shine.
So WHY do I talk openly about ostomy? Because anyone may need one in their life, and I want that person to know their life will go on, there is support and understanding, and they, too, can speak openly. The more we do that, the more OSTOMY WILL BE A HOUSEHOLD WORD!
Good one
I think you are braver than the average person! So be proud and feel good you are helping so many!
You show amazing strength and acceptance. I admire you and all you do.
How true Ellyn ! More people need to know hat we too can live normal lives in spite of our ostomies.
BRAVO!
Why NOT??? There’s so much stigma attached to this ‘shitty’ disease – we need to educate & support each other. The way you relieve yourself does not define who you are as a person.
You go girl – I am proud to stand beside you as a ‘Badass for Ostomy Education.’
Going away this weekend, flying for the first time since getting Petunia – fingers crossed for an easy walk thru TSA (I’m all prepared w/my UOAA card).
You’re amazing! Written like the true number 1,cheerleader and advocate for all ostomates that you are! You go girl is right! How inspiring you always are, Ellyn. Lucky us who are your friends❣️
Ellyn, you are changing the landscape of medicine in our country. With your information and advocacy work, more people who need an ostomy will thrive and contribute to their communities instead of withdrawing in shame.
I recently started sharing about my ileostomy with others. I once felt embarrassed to tell others. In the past few weeks I decided that I would like to advocate for the ostomy community.