One of our Abilitee Ambassadors, Renee, wrote the following about her experience creating a social group to help young ostomates connect.
For me, choosing to create my stoma and living with an ileostomy has never been a choice that I have regretted. My life has improved one thousand fold and I’m so grateful for the experiences and opportunities that life has offered.
However, having a stoma can be equally as horribly lonely. As ostomates, we hear startling facts about the number of people living with a stoma. In December of last year, one American news outlet reported that 750,000 Americans have an ostomy, with 130,000 surgeries adding to those numbers each year. When I first heard those numbers, I was astounded and amazed. It made me realise that there were so many other people living like me in the world and horrified that I didn’t know a single one.
Today, social media continues to do amazing work connecting ostomates around the world, creating friendships that would have never been possible before and lifting the spirits and confidence of Ostomates everywhere.
I was one of those many ostomates who, at the time of my initial surgery, reached out to so many incredible people around the world and in turn I slowly became much more comfortable and understanding of my new life.
The one aspect that I continued to struggle with however was actual personal associations and friendships with ostomates in the same geographic area as me. While I felt connected to the online ostomy community, I still felt alone in Sydney, Australia.
In 2016, my small bowel twisted resulting in a lengthy hospital stay. During my time on the surgical ward I met a mixture of people, two in particular stuck with me. The first was a woman in her 30s, who had previously had a kidney transplant, was on at home dialysis and was facing another kidney failure. Despite her situation, she never once complained, the smile never left her face and even on the days when she couldn’t leave her bed, she encouraged the other women in the room to continue to be strong.
The second was a woman newly diagnosed with colon cancer who was preparing for the possibility of life with a stoma. The complete opposite to the strong woman across from her, she spent her days petrified, confused, crying and alone. At that stage, I had never met anyone else faced with the possibility of a stoma, and so spending my days talking about my life and everything that I could still or now do was incredibly cathartic for us both. The memories of that bond have stayed with me and helped to comfort me knowing that I was not alone when I felt down or struggled with my stoma.
At the end of 2018 I reached out to some Sydney ostomates and organised to meet up at the iconic Bondi Beach mural walk where one local ostomate had painted a mural of beachgoers in their bikinis and boardies with their stoma bags out and proud. With the incredible generosity of Abilitee Adaptive Wear, each ostomate unbuttoned their pants and with pride and varying levels of confidence we struck a pose in our pouch covers in the middle of Bondi Beach for the world to see.That day, we forged a friendship that has continued and it was the catalyst for the formation of a more formal ostomy support group.
Similarly to the stoma education materials, support groups are generally frequented by much older ostomates and are held during work hours. Our group, Ostomingle, is perhaps the complete opposite. I wanted to be able to reach out to other Sydney ostomates, share my experiences, thoughts and worries, and learn from one another in an environment that did not resemble a hospital ward. March 2nd marked the first meeting of Ostomingle and it was a great success with ostomates travelling from all corners of Sydney and even from as far as Canberra.
The “meeting”, or what I like to refer to as the “mingle” allowed everyone to relax over a drink (or a few) and lunch, just as they would a get together with any of their other friends, as we spoke about our stomas and life in general, forging unlikely friendships.
Ostomingle has already received positive praise and I am extremely humbled by the positive reactions of Sydney ostomates, as well as ostomates around Australia and the US who have reached out. I must also thank the companies around the world (of course once again Abilitee Adaptive Wear , and Beyond Definition, Marshmallow Club, Shine + drink, and Clean Tea) who have generously donated and supported Ostomingle and treated our members to spectacular gift bags.
I am so proud to stand behind Ostomingle and I can’t wait to see what the future will bring us!