How to find ostomy support groups

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Living with an ostomy brings unique challenges and triumphs. While medical professionals provide essential physical care, the emotional and psychological aspects often benefit immensely from connecting with others who share similar experiences. Ostomy support groups offer a vital sanctuary – a place for shared understanding, practical advice, and genuine camaraderie. This guide will walk you through the precise, actionable steps to locate and engage with ostomy support groups, ensuring you find the community that best supports your journey.

The Imperative of Connection: Why Ostomy Support Matters

Beyond the technical aspects of ostomy care, the journey often involves adapting to a new body image, navigating social situations, and managing emotional fluctuations. Isolation can amplify these challenges, leading to feelings of loneliness, anxiety, and depression. Ostomy support groups counter this by providing:

  • Validation: Knowing you’re not alone and that your feelings are normal.

  • Practical Wisdom: Learning real-world tips and tricks for managing your ostomy that only experienced ostomates can offer.

  • Emotional Resilience: Gaining strength and coping mechanisms from others who have navigated similar hurdles.

  • Reduced Stigma: Openly discussing your ostomy in a safe space normalizes the experience.

  • Advocacy and Awareness: Opportunities to contribute to a larger movement that champions the rights and needs of ostomates.

Finding the right support group is not just about attending meetings; it’s about actively seeking a network that empowers you to live a full and vibrant life.

Strategic Mapping Your Search: Where to Begin Your Ostomy Support Quest

Your search for an ostomy support group can start from several different points, each offering a distinct pathway to connection. Consider these avenues:

Consulting Your Healthcare Team: The First and Most Direct Route

Your medical professionals are often the gatekeepers to immediate and relevant resources.

  • Your Ostomy Nurse (WOCN/CWOCN): This is your primary point of contact. Certified Wound, Ostomy, and Continence Nurses (WOCN or CWOCN) are specialists trained in ostomy care and patient education.
    • Actionable Step: When you have your next appointment, explicitly ask your ostomy nurse, “Are there any local ostomy support groups or peer visitor programs you recommend?” Many nurses maintain lists of local groups, know about hospital-affiliated programs, or can connect you directly with a peer visitor.

    • Concrete Example: “My WOCN at St. Luke’s Hospital gave me a brochure for their monthly ostomy support group, which meets in the hospital’s community room. She also offered to introduce me to a volunteer from their ‘Ostomy Buddies’ program.”

  • Your Surgeon or Gastroenterologist: While not their primary focus, your surgeon or GI specialist may be aware of support services, especially those affiliated with the hospital or medical center where you had your surgery.

    • Actionable Step: During a follow-up visit, inquire, “Do you know of any patient support groups for ostomates connected to this practice or hospital?”

    • Concrete Example: “After my colectomy, Dr. Chen’s office assistant handed me a card for a virtual support group run by the hospital’s patient advocacy department, specifically for new ostomates.”

  • Hospital Patient Services/Social Work Department: Hospitals often have departments dedicated to patient support, including social workers or patient navigators who can provide resources beyond immediate medical care.

    • Actionable Step: Call the main hospital number and ask to be connected to “Patient Services” or “Social Work” and explain you are looking for ostomy support group information.

    • Concrete Example: “I called the main line for City General Hospital, asked for Patient Services, and the representative directed me to their online directory of support groups, where I found two ostomy-specific groups listed.”

Leveraging National and International Ostomy Organizations: Broadening Your Reach

Dedicated non-profit organizations are pillars of the ostomy community, providing extensive resources, including support group directories.

  • United Ostomy Associations of America (UOAA): UOAA is a leading national organization for ostomates in the United States. They have a comprehensive “Affiliated Support Group” (ASG) network.
    • Actionable Step: Visit the UOAA website. Look for a “Support Group Finder” or “Find a Local Chapter” section. Enter your zip code or state.

    • Concrete Example: “I went to ostomy.org, clicked on ‘Find Support Group,’ entered my zip code ‘10001,’ and a list of three local in-person groups and two virtual groups popped up, complete with meeting times and contact information.”

  • International Ostomy Association (IOA) / European Ostomy Association (EOA): If you are outside the US, or looking for broader connections, these organizations can guide you to national ostomy associations in your country.

    • Actionable Step: Search online for “International Ostomy Association” or “[Your Country] Ostomy Association.” Their websites typically link to member organizations or provide a global directory.

    • Concrete Example: “Living in Canada, I searched for ‘Ostomy Canada Society’ and found their website. They had a section with a map showing local chapters and contact details for support groups across the provinces.”

  • Disease-Specific Foundations (e.g., Crohn’s & Colitis Foundation, Colorectal Cancer Alliance): Many ostomies are a result of conditions like Inflammatory Bowel Disease (IBD) or colorectal cancer. These foundations often have ostomy-specific resources or sub-groups.

    • Actionable Step: If your ostomy is due to a specific condition, visit the website of relevant disease foundations. Look for “Support,” “Resources,” or “Living with an Ostomy” sections.

    • Concrete Example: “Because my ostomy resulted from Crohn’s disease, I visited the Crohn’s & Colitis Foundation website. Under their ‘Patient Resources,’ they had a list of virtual ostomy support groups specifically for IBD patients.”

Harnessing the Power of the Internet: Digital Communities and Virtual Connections

The internet offers unparalleled access to a diverse range of ostomy support, especially valuable if local in-person options are limited.

  • Dedicated Online Forums and Communities: Several websites host forums where ostomates share experiences and advice.
    • Actionable Step: Use search terms like “ostomy forum,” “ostomy online community,” or “stoma support forum.” Websites like Inspire.com host condition-specific communities, including those for ostomates. Coloplast’s MyOstomyLife also offers a platform.

    • Concrete Example: “I joined the ‘Ostomy Connection’ forum online. Within hours, I posted a question about appliance leakage and received several helpful, practical solutions from experienced members.”

  • Social Media Groups (Facebook, Reddit): Private and public groups on platforms like Facebook and subreddits on Reddit provide active discussion spaces.

    • Actionable Step: On Facebook, search for “ostomy support group,” “colostomy support,” “ileostomy support,” or “urostomy support.” Filter results for “Groups.” For Reddit, go to reddit.com and search for “r/ostomy.” Many groups are private, requiring a request to join, which helps maintain a safe environment.

    • Concrete Example: “I found a private Facebook group called ‘The Real Ostomy Support Group.’ After answering a few screening questions, I was admitted. The daily discussions, product recommendations, and shared struggles made me feel instantly connected.”

  • Virtual Meetings (Zoom, Google Meet): Many traditional in-person groups now offer virtual meeting options, and entirely virtual groups have emerged.

    • Actionable Step: Check the websites of UOAA, major hospitals, or disease-specific foundations for “virtual support group” listings. Meetup.com also lists virtual groups.

    • Concrete Example: “I couldn’t find an in-person group near me, so I searched ‘virtual ostomy support group’ on Google. I discovered a monthly Zoom meeting hosted by a large medical center three states away, which perfectly fit my schedule.”

  • YouTube and Instagram: While not traditional “groups,” many ostomates share their journeys on these platforms. Following them can build a sense of community and provide valuable insights.

    • Actionable Step: Search for hashtags like #ostomy, #ostomate, #stomabags, or content creators sharing their ostomy experience. Engage respectfully in comments.

    • Concrete Example: “I started following ‘OstomyLifeWarrior’ on Instagram. Her candid posts about daily life with an ostomy made me feel less alone and more confident about my own journey.”

Local Community Resources: Tapping into Your Immediate Environment

Don’t overlook resources right in your neighborhood.

  • Community Centers and Churches: Some community centers, senior centers, or churches host various support groups.
    • Actionable Step: Check their activity schedules or bulletin boards, or call their reception to ask if they host any health-related support groups.

    • Concrete Example: “Our local community center has a monthly newsletter, and tucked away on page 3, I saw a listing for a ‘Stoma Support Circle’ meeting every third Tuesday.”

  • Local Pharmacies or Medical Supply Stores: These businesses often cater to specific medical needs and might know about local groups or even host events.

    • Actionable Step: While picking up supplies, politely ask the pharmacist or staff if they are aware of any local ostomy support groups or resources.

    • Concrete Example: “When I picked up my ostomy supplies at ABC Medical Supply, the clerk mentioned they sometimes have informational sessions and that a local ostomy group meets at a nearby church, giving me the contact person’s name.”

  • Public Libraries: Libraries are community hubs and may have bulletin boards, resource binders, or staff who can point you to local health and support services.

    • Actionable Step: Visit your local library and look for community event listings, or ask a librarian for health resource information.

    • Concrete Example: “The public library in my town has a ‘Community Resources’ binder, and under the ‘Health & Wellness’ section, I found a flyer for an ‘Ostomy Chat Group’ that met at a different library branch.”

Navigating the Landscape: Choosing the Right Ostomy Support Group for You

Finding support groups is one thing; finding the right one is another. Not all groups are a perfect fit, and it’s essential to consider what you need.

In-Person vs. Virtual: Deciding Your Preferred Interaction Style

Both formats offer unique advantages.

  • In-Person Groups:
    • Pros: Offer direct human connection, body language cues, opportunities for immediate personal interaction, and a shared physical space. Can foster stronger bonds over time. Often include guest speakers (WOCNs, dietitians, product reps) and product demonstrations.

    • Cons: Limited by geography and transportation, may require more planning, less anonymity for those who prefer privacy.

    • Actionable Consideration: If you value direct interaction and live near a group, try attending an in-person meeting.

    • Concrete Example: “I chose the in-person group because I learn best from face-to-face conversations and wanted to see how others manage their pouches in person, rather than just hearing about it.”

  • Virtual Groups:

    • Pros: Highly accessible regardless of location, offer anonymity (you can choose to keep your camera off or use a pseudonym), flexible scheduling, wider reach for diverse perspectives.

    • Cons: Can feel less personal, potential for technical issues, may lack the immediate tactile benefits of in-person product demonstrations.

    • Actionable Consideration: If you have mobility issues, live in a rural area, or prefer privacy, virtual groups are an excellent choice.

    • Concrete Example: “My work schedule makes it hard to attend in-person meetings, so the virtual support group, which meets in the evenings, is perfect. I can log in from home and still connect with people.”

General Ostomy Support vs. Specialized Groups: Tailoring Your Needs

Some groups cater to all ostomates, while others focus on specific aspects.

  • General Ostomy Support Groups: These are the most common and welcome individuals with any type of ostomy (colostomy, ileostomy, urostomy) and at any stage of their journey.
    • Actionable Consideration: Start here if you’re new to ostomy or unsure of your specific needs.

    • Concrete Example: “The UOAA-affiliated group I joined was general, and it was great because I met people with all types of ostomies, which gave me a broader understanding of different challenges and solutions.”

  • Disease-Specific Groups: For individuals whose ostomy is a result of a particular condition (e.g., Crohn’s disease, ulcerative colitis, colorectal cancer). These groups often delve into the underlying condition as well as ostomy management.

    • Actionable Consideration: If your ostomy is related to a specific illness, these groups can provide dual support.

    • Concrete Example: “I joined an online support group specifically for ostomates with Crohn’s. It was incredibly helpful because we discussed not only pouching systems but also diet strategies for managing IBD symptoms alongside the ostomy.”

  • Age-Specific Groups: Some groups cater to younger ostomates, teens, or even parents of children with ostomies.

    • Actionable Consideration: If age-related experiences are important to you, seek out these specialized groups.

    • Concrete Example: “As a young adult with an ostomy, I struggled to relate to older members in general groups. I found a ‘Young Ostomates’ virtual meetup, and suddenly I was surrounded by peers facing similar dating and career challenges.”

  • Caregiver Support Groups: For spouses, partners, or family members supporting an ostomate.

    • Actionable Consideration: If you are a caregiver, look for groups designed for you to share experiences and receive support.

    • Concrete Example: “My wife attended a caregiver support session, and it helped her understand my daily challenges better and connected her with other spouses who shared advice on how to best support their partners.”

Peer Visitor Programs: One-on-One Support

Many organizations offer peer visitor programs, connecting new ostomates with experienced “veteran” ostomates for personalized, one-on-one support. This can be a vital first step for those not ready for a group setting.

  • Actionable Step: Ask your ostomy nurse about local peer visitor programs. UOAA’s “Team HOPE” is a prominent example where you can be matched with a trained peer.
    • Concrete Example: “Before my surgery, my WOCN arranged for me to speak with a ‘Team HOPE’ volunteer who had an ileostomy similar to what I was getting. Hearing her positive experience and getting practical tips beforehand reduced my anxiety significantly.”

Engaging Effectively: Making the Most of Your Support Group Experience

Simply showing up isn’t enough. Active and thoughtful engagement will maximize the benefits you gain.

Preparing for Your First Meeting: What to Expect and How to Participate

  • Listen Actively: Your first meeting is primarily for observation. Pay attention to the types of discussions, the group dynamic, and the support offered.
    • Actionable Step: Before speaking, listen to how others share their experiences and what kind of advice is given.

    • Concrete Example: “During my first virtual meeting, I kept my camera off and just listened. I learned so much from how people described their challenges and the creative solutions they’d found.”

  • Share Your Story (When Ready): You don’t need to share everything at once. Start with what you’re comfortable discussing.

    • Actionable Step: When you feel ready, introduce yourself and briefly mention why you’re there. You might say, “Hi, I’m [Your Name], and I had an ileostomy three months ago. I’m hoping to learn more about managing output.”

    • Concrete Example: “After two meetings, I felt comfortable enough to share my struggles with night leakage. The immediate empathy and practical tips I received were incredibly reassuring.”

  • Ask Specific Questions: Support groups are invaluable for practical advice that isn’t always covered by medical professionals.

    • Actionable Step: Come prepared with a few questions. Examples: “What are your best tips for traveling with an ostomy?” or “Does anyone have recommendations for clothing that conceals the pouch effectively?”

    • Concrete Example: “I asked the group about the best products for odor control, and three different members immediately chimed in with their tried-and-true solutions, which I then went home and ordered.”

  • Offer Support to Others: As you gain experience, you’ll be able to help new members. This reciprocal support enriches the group for everyone.

    • Actionable Step: If someone shares a challenge you’ve overcome, offer your experience or a helpful tip. “I used to have that issue too. What worked for me was…”

    • Concrete Example: “A new ostomate shared her frustration with skin irritation. Having dealt with it myself, I shared my routine for using barrier rings and skin prep, and she seemed genuinely relieved to hear it.”

Maintaining Engagement and Long-Term Benefits

  • Regular Attendance: Consistency builds relationships and ensures you stay connected to the evolving discussions and resources.

    • Actionable Step: Mark meeting dates on your calendar and treat them as important appointments.

    • Concrete Example: “I’ve made the first Thursday of every month my dedicated ostomy group night. It’s become a cornerstone of my support system.”

  • Participate in Discussions Beyond Meetings: Many online groups and even some in-person groups have supplemental communication channels (e.g., email lists, private Facebook chats) for ongoing discussions.

    • Actionable Step: If a group offers an online forum or chat, join it and contribute between meetings.

    • Concrete Example: “Our virtual group has a WhatsApp chat, and people post questions, celebrate milestones, and share funny anecdotes daily. It’s a constant source of encouragement.”

  • Become a Volunteer/Leader (If Interested): Once you’re comfortable, consider giving back by helping organize meetings, mentor new members, or even become a certified peer visitor.

    • Actionable Step: Speak with the group facilitator or a UOAA representative about volunteer opportunities.

    • Concrete Example: “After a year, I felt I had enough experience to help others, so I trained to become a UOAA Team HOPE volunteer. It’s incredibly rewarding to guide someone through those early, difficult weeks.”

  • Respect Privacy and Confidentiality: What is shared in the group should stay within the group. This fosters a safe and trusting environment.

    • Actionable Step: Avoid sharing personal details about other members outside the group.

    • Concrete Example: “I always remember the ground rules about confidentiality. It helps everyone feel comfortable sharing openly about very personal topics.”

Troubleshooting Your Search: When Initial Attempts Fall Short

Sometimes, finding the ideal group isn’t immediate. Don’t get discouraged.

What if there are no local groups?

  • Explore Virtual Options More Deeply: The internet is a vast resource. Look beyond just the largest national organizations for virtual groups. Search for “ostomy support Zoom meeting” or “online stoma community.”
    • Actionable Step: Check smaller, localized hospital websites or regional disease-specific chapters (e.g., a regional Crohn’s & Colitis Foundation chapter) as they might host virtual events not listed on national sites.

    • Concrete Example: “There were no groups within an hour’s drive, so I focused on virtual options. I found a great virtual group through a Facebook post from a WOCN in a neighboring state.”

  • Consider Starting Your Own: If a significant need exists in your area and you’re motivated, you could initiate a group.

    • Actionable Step: Contact UOAA or your local hospital’s WOCN department for guidance and resources on how to establish an affiliated support group. They can often provide materials and mentorship.

    • Concrete Example: “After realizing there was no support for young ostomates in my city, I reached out to UOAA for their ‘How to Start a Support Group’ guide. They helped me find a venue and connect with a local WOCN to co-facilitate.”

What if a group isn’t a good fit?

  • Try Multiple Groups: Different groups have different atmospheres and focuses. Don’t dismiss support groups entirely if the first one isn’t right.

    • Actionable Step: Attend a few meetings of different groups if possible, both in-person and virtual, to compare their dynamics.

    • Concrete Example: “The first in-person group felt a bit too clinical for my taste. I then tried an online group that was more informal and social, which I preferred.”

  • Communicate Your Needs: If you find a group’s format or focus isn’t quite right, you might gently inquire if there’s room for adjustment or if other specialized groups exist.

    • Actionable Step: Approach the facilitator privately and express your specific needs. “I appreciate this group, but I’m particularly interested in discussions about [specific topic]. Is that something the group addresses, or are there other resources you’d suggest?”

    • Concrete Example: “I spoke to the facilitator of my general ostomy group and explained I was looking for more detailed discussions about exercise with an ostomy. She then invited a fitness expert with an ostomy to be a guest speaker at the next meeting.”

Dealing with Privacy Concerns

  • Control Your Information: You are always in control of what you share, especially in online forums.

    • Actionable Step: Use a pseudonym if you prefer in online groups. In person, you can choose to share only your first name.

    • Concrete Example: “In the online forum, I created a username that didn’t reveal my identity, and I only shared information I was comfortable with. It gave me peace of mind.”

  • Understand Group Rules: Most reputable support groups have guidelines regarding confidentiality.

    • Actionable Step: Familiarize yourself with the group’s rules. If they are not clear, ask the facilitator.

    • Concrete Example: “Our group leader always reminds us at the beginning of each session that what’s said in the group stays in the group, which builds a strong sense of trust.”

Conclusion: Embracing the Power of Shared Journeys

Finding an ostomy support group is more than just locating a meeting; it’s about discovering a community that truly understands. By systematically approaching your search – starting with your healthcare team, exploring national organizations, leveraging online platforms, and tapping into local resources – you can uncover a wealth of support tailored to your unique needs. Remember to consider your preferences for in-person versus virtual, and general versus specialized groups. Once connected, engage actively, share your experiences when ready, and never hesitate to seek out a different group if the first one doesn’t resonate. The journey with an ostomy can be deeply personal, but it doesn’t have to be solitary. Embrace the power of shared experiences, and you will find an invaluable source of strength, knowledge, and connection.