It is probably difficult to imagine, both a culmination and a beginning, but last week we celebrated World Ostomy Day in some amazing ways. I can only speak for myself and those with whom I was involved, but my guess is that Ostomates all over the world had the opportunity to feel the change that is not simply coming, much of it is here! This year’s motto, as designated by the European Ostomy Association is “Ostomates’ Rights are Human Rights-anytime and anywhere!” It certainly felt like a worldwide proclamation to me and those with whom I celebrated, participated and supported.

ConvaTec is one of the manufacturers of the Ostomy supplies which enable us to be able to go out into the world, live our best lives and protect our stomas. They sponsored a global summit on patients’ rights on Friday, October 1, 2021, and I was invited to be on the small panel to discuss the topic in a most positive way, “This is my life now.” On the panel were amazingly bright, articulate and knowledgeable women, and believe me, I was humbled to be “one of them.” 

The moderator, Kerri Holman, is a Wound and Ostomy Continence Nurse, who was able to take the best of what we had to say and bring it to the listener. She was tasked with not only knowing the key points to be discussed, but how to allow each of us, with so much to share and such a passion to do so, to speak on specific questions or topics.

Joanna Burgess is a Wound and Ostomy Continence Nurse who has two ostomies, one from the age of 3 years old. She has taken her vast experience as an Ostomate and nurse and speaks and guides hundreds of Ostomates with issues each month through the ConvaTec Me+ program. There wasn’t an aspect of living with or guiding those living with an ostomy she couldn’t address beautifully.

Jeanine Gleba is the Advocacy Manager of the United Ostomy Associations of America, and she is a dynamo. She is a Jersey Girl, so we have known each other since she assumed her position, and her ability to never give up on an issue, get what needs to be done for Ostomates, fight for our Patient Bill of Rights in every way possible has become legend already. We are so fortunate to have such a voice, and she invited me as the “Patient” on the panel to represent my people, my community. I felt a huge responsibility to be able to discuss the key issues with which we struggle, and to be certain that there was a sense of satisfaction for Ostomates, not frustration, which happens all too often. 

The Summit took a great deal of coordinating and we felt supported by the resources behind such an event and wanted to give our all and do our best. A special THANK YOU to Allison Sirchio from ConvaTec for helping us to not waste the opportunity to be an amazing resource for all who attended. It was a culmination, but I also believe it was a beginning of more and more efforts to serve our underserved population.

The following day, which was the true World Ostomy Day, I walked with one of my Ostomy Support Groups and the weather and the location were spectacular. Thank you to Sandra Johansen, Stacy Krakower, and Liz Vocaturo from RWJBarnabas in Livingston, New Jersey. They not only provided blue tee shirts so we looked like the team we were, but snacks and ostomy goodies, water and cupcakes. We needed nothing more to be motivated to do our close to 2 mile walk at the Waterfront in the gorgeous South Mountain Reservation.

I was quite exhausted by Sunday but thrilled beyond words to be part of great moments in the development of Ostomy Awareness. I even spoke with a woman walking by us, a total stranger, who noticed the sea of blue shirts and asked who we were? When I told her, showed her my little rosebud stoma pin and the reason for our walk, she shared with me that her son is suffering with IBD, may need an ostomy, so I took my card out of my fanny pack and handed it to her. You know that I would never want to miss an opportunity to give someone hope, and the hand of fate placed that mother and I together for a reason. Who knows, her son, who will hopefully be much healthier at that point, may walk with us next year. If so, he will be well-supported, I can guarantee it!

 

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