group of people in a circle showing fists.

Navigating Life with an Ostomy: Support Groups in the USA

Living with an ostomy, whether temporary or permanent, presents unique challenges that can be both physically and emotionally demanding. Navigating life after surgery often requires more than just medical care—it involves finding a supportive community that understands your experience. Thankfully, numerous resources and support groups throughout the United States are available to provide guidance, empathy, and practical advice. Here’s a look at some of the primary support groups and communities for ostomy patients across the country.

1. United Ostomy Associations of America (UOAA)

UOAA is a leading nonprofit organization that offers advocacy, support, and education for those who have had ostomy surgery. They provide a network of local support groups across the USA, where members can connect with others facing similar challenges. These groups often organize meetings, social events, and educational sessions, creating a sense of community and mutual support.

The Ostomy Support Group Finder, provided by UOAA, is an excellent online tool that helps individuals find local support groups based on their zip code or city, making it easy for ostomy patients to access nearby support networks.

2. Facebook Support Groups

In today’s digital world, social media platforms like Facebook have become vital resources for ostomy patients. Numerous private and public groups are dedicated to ostomy support, where members can share experiences, ask questions, and offer encouragement. Facebook hosts a variety of specialized groups, including those tailored for people with ileostomies, urostomies, colostomies. These groups provide real-time support and a sense of community for individuals who may not have access to local in-person groups. The diverse range of groups ensures that ostomates can find the right community that addresses their unique needs.

3. Reddit Ostomy Community

Reddit hosts an active community focused on ostomy-related discussions, and like Facebook, hosts specialized subreddits for different types of ostomies. The Ostomy subreddits provide a platform where users can ask questions, share experiences, and find support from fellow ostomates worldwide. It’s a dynamic space for both practical advice and emotional support in a digital format.

4. Ostomy 101

Ostomy 101 is a comprehensive online resource offering guidance, tips, and practical information for those new to ostomy care. Covering a wide range of topics from basic ostomy management to lifestyle adjustments, it provides valuable resources for both ostomates and caregivers.

5. Meet an Ostomate

Meet an Ostomate is an online community that connects ostomates globally. It serves as a platform for individuals to create profiles, share experiences, and connect with others through direct messaging who have undergone similar experiences. The site also features forums and resources to support ostomates in their daily lives.

6. Crohn’s and Colitis Foundation

Although primarily focused on inflammatory bowel diseases (IBD) such as Crohn’s disease and ulcerative colitis, the Crohn’s and Colitis Foundation also offers support and resources for individuals with ostomies. Their extensive network includes local chapters that may host events specifically for ostomy patients, providing another valuable source of support and education.

7. Girls with Guts

Girls with Guts is a supportive community specifically for women with chronic digestive diseases, including those who have had ostomy surgery. They offer online forums, in-person meetups, and empowerment retreats.

The retreats are designed to help women build confidence, share their experiences, and gain inspiration from others facing similar challenges. Additionally, Girls with Guts emphasizes the importance of self-care and provides educational content to help women navigate life with an ostomy. Their community-centric approach ensures that members receive both emotional support and practical advice tailored to their needs.

8. Vegan Ostomy

Vegan Ostomy is a specialized resource for individuals who follow a plant-based diet and have an ostomy. Although Eric, the founder of Vegan Ostomy, is based in Canada, the content and community forums are easily accessible to users in the USA. The site offers specific guidance on maintaining a vegan lifestyle while managing an ostomy, including product recommendations, recipes, and community support for those with similar dietary preferences.


By tapping into these resources, you can find the support you need to navigate your journey with confidence and resilience. Whether through in-person groups or online communities, these networks offer a wealth of knowledge, encouragement, and camaraderie.