The Power of Community When You’re Living With an Ostomy
You Are Not Alone, Even If It Feels Like It
When I first came home from surgery, everything felt new, overwhelming, and honestly a little scary. I was learning how to live with my ostomy, trying to understand my new body, and doing my best to stay strong for my family. Even with a loving husband, kids, and friends, I still felt this quiet feeling of being the only one going through something like this.
Two weeks after surgery, something inside me said, share this. So I did a Facebook Live. I sat there, still healing, still swollen, still emotional, and I told my community exactly what had happened. I told them I woke up with an ostomy. I told them how scared I had been. And I told them something that I believed so strongly in that moment.
We need to love our bodies, no matter what. We need to love ourselves, no matter what changes come our way.
That moment connected me to people in a way I didn’t expect. People reached out with encouragement, with similar stories, with compassion. It was the beginning of building a community I didn’t even know I needed.
And then something else happened that changed everything.
A friend sent me a Facebook post of a young woman in a bikini confidently showing her ostomy. She was featured in People Magazine. That woman was Jess Grossman, who I later interviewed on my podcast. Seeing her reminded me that I was not alone. That every body has a story. That beauty and strength show up in many different ways.
You Are Part Of A Global Community
Here is something most people don’t realize. There are an estimated 750,000 to 1 million people living with an ostomy in the United States, and more than 13 million worldwide.
Thirteen million people building confidence, finding new routines, and learning to love their bodies again. Thirteen million people saying yes to life after surgery.
You are part of a huge community, even if it doesn’t always feel like it.
The Community I Found Changed Everything
From that first Facebook Live, to the day I saw Jess’s story, to the hundreds of people I’ve met on social media, this community has shaped my journey.
People messaged me with tips. People shared routines and mistakes and little hacks. People told me their stories with honesty and courage.
I began meeting ostomates around the world who inspired me daily. It helped me feel normal again. It helped me feel supported. It helped me feel strong.
Another big milestone for me was partnering with Hollister back in 2019. That partnership allowed me to hear even more stories, see how many people were living full lives with an ostomy, and understand what our community truly needed.
Every conversation has made me better. Every connection has given me purpose. Every person I’ve met has helped me heal.
Where Community Helped Me Most
Community helped me realize:
I was not the only one.
My body was not broken.
And life could still be beautiful.
Having someone who understands your routines, your challenges, and your fears brings a sense of calm that is impossible to put into words.
How To Build Your Own Circle Of Support
Here are a few ways to start building your own community.
Connect online. Social media has created a massive global ostomy community.
Join support groups. There are incredible groups available virtually and in person.
Ask questions. Truly, nothing is too small.
Share your own story when you are ready. You never know who needs your voice.
Connection builds confidence, especially in the early days.
A Final Reminder For Today
You are part of a community that is strong, supportive, and filled with people who understand you. You are not alone. You are seen. You are supported. And you belong here.
You May Also Like
• Traveling With an Ostomy
• What I Wear With My Ostomy
• Naming Your Stoma And Why It Helps
If you want weekly encouragement, tips, and real support from someone who truly understands this journey, join my Ostomy Living emails here. I would love to walk this road with you.
Love,
LA
