Support and Community

Finding Support and Community with an Ileostomy


Living with an ileostomy can be a profound personal journey, often accompanied by unique challenges and experiences. Finding the right support and building a community around this experience is crucial for emotional well-being, practical advice, and personal growth. This article aims to explore various avenues for support and community-building for those living with an ileostomy, helping to foster a network of understanding, care, and shared experiences.

Leveraging Online Platforms and Social Media

  • Online Support Groups: Join online forums and support groups specifically for individuals with ileostomies. These platforms offer a space to share experiences, advice, and encouragement.

  • Social Media Communities: Follow social media pages and groups dedicated to ileostomy care and support. Engage with others’ posts and share your own journey.

  • Blogs and Personal Stories: Read and contribute to blogs that focus on living with an ileostomy. Personal stories can be incredibly inspiring and educational.

  • Webinars and Online Events: Participate in webinars, virtual meetups, and online events to stay informed and connected with the ileostomy community.

Connecting with Local Support Groups and Health Professionals

  • Local Support Meetings: Seek out local support groups and attend their meetings. Face-to-face interactions can provide a different level of support and connection.

  • Building Relationships with Healthcare Providers: Establish strong relationships with your healthcare providers, including nurses and doctors who specialize in ostomy care.

  • Educational Workshops and Seminars: Attend workshops and seminars offered by hospitals or health organizations to learn more about ileostomy management and to meet others with similar experiences.

  • Volunteering for Awareness: Get involved in volunteering opportunities related to ileostomy awareness and support, which can be rewarding and empowering.

Engaging with Family, Friends, and Personal Networks

  • Educating Your Inner Circle: Take the time to educate your family and friends about what living with an ileostomy involves. This can help them understand your needs and experiences.

  • Seeking Emotional Support: Lean on your personal network for emotional support. Open conversations about your challenges and achievements can strengthen your relationships.

  • Involving Loved Ones in Your Journey: Invite your loved ones to attend support group meetings or educational sessions with you. This can help them become more involved and supportive.

  • Sharing Your Story: If comfortable, share your journey with your wider personal network. This can raise awareness and can also connect you with others who might be going through similar experiences.


Building a support network and finding a community when living with an ileostomy is invaluable. Whether through online platforms, local support groups, or personal relationships, the connections made can provide not only practical advice but also emotional support and a sense of belonging. Remember, you are not alone in your journey, and there are many avenues available to find understanding, empathy, and camaraderie.

Ostomy Canada Society Inc. is not an organization of medical professionals. The information provided on our website is intended for educational purposes only and should not be considered a substitute for professional medical advice, diagnosis, or treatment.

It is crucial to consult with a qualified healthcare professional, including your physician or a Nurse Specialized in Wound, Ostomy, and Continence (NSWOC), before making any decisions about your health. Every individual’s medical condition is unique, and what may be suitable for one person may not be appropriate for another.

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