Let's Talk About the Ostomy Community

Actor, model, businesswoman, and cancer survivor LeeAnne Hayden found ostomy support online – and helps others do the same.

Read about how LeeAnne created “The Beautiful Bag” podcast and built a social media community.

When I first found out I might have to have a colostomy bag, I was devastated. I told my doctor that if he opened me up to remove the cancer and saw that I was going to need a bag, to close me back up and leave the cancer there. Now, because I had a great relationship with my surgeon, he pretty much yelled at me and said that if I was going to be in an ostomy pouch, it would be the last resort. His job was to save my life – and so I listened, and that’s exactly what he did.

I can’t imagine being here on this earth and not living full out. I speak with a lot of ostomates on my podcast and we all say the same thing: our ostomies have given us a second chance at life. They have also given us a community that we didn’t realize was even out there.

Finding ostomates and ostomy support groups online

I think that may have been the scariest part for me – thinking I was the only one, and that no one would understand that young or youngish people can have ostomy bags. Boy was I foolish to believe that. In the beginning, I didn’t know there were communities of people like me. It wasn’t until I started posting on social media about my journey that my friends/followers started to share more stories about other ostomates that they knew or had seen.

I then began searching online using the hashtag “#ostomy” and found so many people my age and older to connect with. I mean thousands – especially on Instagram. For some reason that platform has been the biggest one. Facebook also has a bunch of great ostomy support groups. And if you are into TikTok, search the hashtag there too! So many people are sharing their stories everywhere. You can build your ostomy community right online and surround yourself with people who understand what you are going through.

Creating “The Beautiful Bag” podcast and building an ostomy community

Once I started finding fellow ostomates, I decided to create The Beautiful Bag podcast to share their stories so that we all know we are not alone. Each week I host a guest who talks about their experiences and educates listeners about what it’s like to live with a stoma.

Through these interviews, I learned about Facebook groups, and local and national associations like the United Ostomy Associations of America (UOAA) where people meet up virtually or in person. I have yet to go to a live meeting, since I only discovered they were out there over this last year or so. But as I hear of in-person meetings happening, I will be going so I can meet more people. I have even met some amazing fellow ostomates through my association with Hollister as well!

By researching and reaching out, I’ve built such a great social media community around me. We all consider each other to be friends, real friends. We can call someone when we need to or ask questions in the Facebook groups. Having your family and friends is great; they will always be there to support you. They will even be empathetic and try to understand what you’re going through, which is wonderful. But there is nothing like having someone in your life who is walking in the same shoes that you are, that can understand the struggles you may be going through.

Talking to others about your ostomy

Speaking of families and friends, I remember that when I first had my ostomy I had so many concerns when getting together with people, even though most knew about my situation. I wondered all kinds of things: How am I going to answer their questions? What if my stoma makes noise? What if it smells? You all know those questions that we ask ourselves.

I was so surprised when most people didn’t ask and left it to me to have the conversation if I wanted too. My ostomy did make some noises. One of the things my surgeon had suggested was that I name my stoma. So, I named it Ivan after my surgeon. When Ivan made noise and someone looked at me, I would just say. “Oh that’s just Ivan, my ostomy”. It took the pressure off and would even sometimes start a conversation. My message to you is to enjoy your time with your family and friends, and have the conversations you are comfortable with. Most people won’t know you have an ostomy unless you want them to.

And always know you can reach out to me personally on social media. I am here on this journey with you!

Financial Disclosure: LeeAnne received compensation from Hollister Incorporated for her contribution to this article.