Living with a stoma doesn't change who you are at your core, and your friends and family are still going to love you. However, one of the most powerful steps you can take is building connections with friends who truly understand what you're going through. Making friends with other ostomates offers a unique kind of support, filled with empathy, practical advice, and a shared sense of resilience. But how can you find people in the ostomy community? And what do you say once you do? Here, we'll go over a few tips for making friends with other ostomates, along with some resources to help you build your community.
Why Connecting with Other Ostomates Matters
Even with the most supportive friends and family, no one truly understands what living with an ostomy is like unless they've experienced it themselves. That's why building friendships with other ostomates is so important. Other people with an ostomy understand the daily challenges and worries in a way that well-meaning friends and family members might not. This can help reduce feelings of isolation and encourage resilience every day.
As an ostomate, finding others who understand your struggles in public and private can also help you overcome difficult emotional periods of anxiety, frustration, embarrassment, and even sadness. They can remind you that you're not alone and offer hope during challenging times. In fact, connecting with other ostomates can be life-changing.
7 Tips to Help You Make Friends Within the Ostomy Community
While it's well worth the effort, making new friends isn't always easy, especially if you're not feeling your best. Here are a few ways to find other members of the ostomy community and build meaningful connections.
1. Start Online in Digital Communities and Forums
Connecting online can be a great first step, especially if you're still adjusting to your ostomy or don’t yet feel comfortable meeting people in person. Digital forums offer accessibility, anonymity, and a broad range of learning experiences. Platforms like Facebook host numerous supportive groups, such as “The Real Ostomy Support Group” or “Ostomy Lifestyle Athletes,” where members exchange advice and encouragement.
Reddit’s r/ostomy is another popular space for open, honest discussions. Inspire.com also hosts condition-specific communities, while MyOstomyLife, created by Coloplast® Care, offers personalized tools and connection opportunities. To make the most of these spaces, start by introducing yourself, asking questions, or commenting on others’ posts. Even a simple “thank you” or word of encouragement can spark meaningful conversation.
2. Attend In-Person Ostomy Support Groups or Events
If you feel comfortable doing so, attending in-person events can be extremely rewarding; nothing compares to face-to-face connections. For example, joining a local ostomy support group can give you a sense of community and belonging. Whether hosted by hospitals, community centers, or national associations, these groups provide a safe space to share stories, ask questions, and find encouragement from others who truly understand what you're going through.
You can check with your ostomy nurse or visit UOAA to find a list of affiliated groups in your area. Larger gatherings, like UOAA’s National Conference, bring together ostomates from all over the country and often feature speakers, workshops, and social events. This is a great way to learn more about related conditions and raise awareness while making meaningful connections in the ostomy community.
3. Use Social Media to Find and Follow Ostomates
Social media platforms like Instagram, TikTok, and YouTube are full of ostomy advocates and influencers who share their real-life journeys, often with a mix of vulnerability and education. Following their accounts can help normalize your experience and open the door to community. It can also serve as a reminder that you're not alone and you have nothing to be ashamed of with an ostomy.
Try to engage with posts by leaving a like, a thoughtful comment, or even sending a direct message to someone. Just remember always to treat others with respect. Everyone's comfort levels are different, and you want to ensure that you honor the privacy and boundaries of others. When approached thoughtfully, these kinds of online interactions can lead to inspiring friendships.
4. Join or Start a Virtual Meetup
Virtual meetups are another great way to connect with other ostomates, especially if travel or mobility is an issue. Many ostomy support groups now host regular video chats or themed discussions via platforms like Zoom. You can find these events through organizations like UOAA, on Meetup.com, or via listings on Eventbrite. If you don’t see one that fits your interests, consider hosting your own. A relaxed “coffee chat” or discussion about a shared topic like travel, fitness, or mental health can be all it takes to bring people together. Just try to set a positive and welcoming tone, and you'll help others feel comfortable opening up.
5. Connect Through Ostomy-Related Activities
Common interests can be a strong foundation for friendship, and many ostomates bond through shared hobbies. There are several ways to find activities within the ostomy community, whether it's a fitness group, a craft session, or a travel community.
Educational webinars hosted by ostomy product manufacturers or support organizations often include time for attendees to interact. You might also look into volunteering for an ostomy nonprofit, as giving back is a great way to meet others with similar passions and life experiences. Friendships often blossom naturally when people come together for a common cause or activity.
6. Be Honest and Open (When You’re Ready)
Regardless of where or how you meet new people, remember that it's your decision regarding if and when you want to talk about your ostomy. Being open about your journey can foster deeper, more authentic relationships, but it’s important to go at your own pace. There’s no pressure to share your whole story right away. Sometimes, a little humor, a bit of encouragement, or a shared curiosity is all it takes to start a conversation. Vulnerability can be powerful, but boundaries matter just as much, so don't feel pressured into talking if you don't want to.
7. Support Others and Let Yourself Be Supported
Friendship is a two-way street. You can build mutual trust and connection by offering support to someone else, especially someone new to the ostomy journey. Regardless of who you're talking to, the added effort makes a difference. At the same time, don’t be afraid to lean on others when you need encouragement. Letting yourself be supported is just as important as giving support; it fosters a reciprocal relationship where everyone benefits. Sometimes, the act of helping or being helped is what turns an acquaintance into a lifelong friend.
How to Help Overcome Shyness and Social Anxiety
It’s completely normal to feel shy or anxious about connecting with others after ostomy surgery, especially when sharing such a personal part of your life. Start small and comment on a social media post, join an online forum, or attend a virtual ostomy support group where you can listen before speaking. Remember, everyone in the ostomy community has their own story and understands what it’s like to feel unsure initially. Over time, these small steps can build your confidence and help you feel more comfortable opening up and making genuine connections.
Additional Resources for Finding and Connecting with Ostomates
Here are a few additional resources to help you start connecting with other ostomates today.
- United Ostomy Associations of America (UOAA) – This is one of the best resources for finding a support group near you.
- Crohn’s & Colitis Foundation – some local chapters host ostomy events
- OstoBuddy App – track your health and connect with others
- Instagram hashtags to explore: #ostomy, #ostomate, #ostomylife
Making friends with other ostomates isn't just about finding people who get what you're going through; it's about creating a sense of belonging, support, and strength. Regardless of where you meet, every connection has the potential to make your journey a little lighter and a lot more hopeful.
At Byram Healthcare, we’re committed to empowering ostomates not just with high-quality ostomy products but with education, resources, and encouragement every step of the way. Because when you feel supported, both practically and emotionally, you can focus less on limitations and more on living fully. Contact us today to learn more.
