Living with a stoma is a life-changing event, bringing about not just physical adjustments but also emotional and social shifts.
Whether you’re dealing with it firsthand or supporting someone who is, the importance of a strong support network cannot be overstated. It’s comforting to know you’re not alone on this journey.
With that in mind, let’s talk about how to find and engage with support groups for people with stomas in the UK, both online and in-person. The goal is to connect you with others who truly understand what you’re going through.
Discover Online Communities
Many online forums, social media groups, and dedicated platforms exist for people with stomas and their friends and family. These spaces offer shared experiences, advice, and encouragement, accessible from the comfort of your home. Here’s how to start:
- Facebook and Instagram: Search for stoma support groups. Many private groups offer a safe space to share stories, tips, and support. Any comments or posts you make in a private group won’t be able to be viewed by anyone outside the group itself. Don’t be shy about joining and introducing yourself!
- Forums and Websites: Look for UK-based stoma support websites. They often host forums and chat rooms. See below for links to some of them.
- X (formerly known as Twitter) Chats: Keep an eye out for hashtags related to stoma care. Regular X chats allow you to join the conversation and connect with others.
Remember, while online, always protect your privacy. Only share what you’re comfortable with.
Engage with Local Support Groups
While online communities are great, there’s something irreplaceable about face-to-face interaction. Local stoma support groups can be invaluable. Here’s how to find them:
- Ask Your Healthcare Provider: Your nurse or consultant likely knows local groups meeting regularly. They can connect you with these groups, providing a direct link to local support.
- Community Centers: Local community centres often have notice boards with information about upcoming group meetings.
- Charities: Organisations such as the Colostomy UK and Urostomy Association often hold local group meetings or can direct you to one.
Tips for Engaging with Support Groups
- Be Open: Sharing your story can be daunting, but everyone is there for similar reasons. Your experience could provide comfort or help to someone else.
- Listen and Learn: Everyone’s stoma journey is unique. Listening to others can provide new insights and tips that might work for you.
- Volunteer: If you feel up to it, volunteering for these organisations or groups can be a rewarding way to give back and strengthen your connections.
Start Your Own Group
If there isn’t a support group in your area, why not start one? Reach out through social media, community centres, or your local GP practice to gauge interest. Even a small, informal group can make a big difference in someone’s life.
Building and engaging with a support network when you have a stoma can significantly impact your emotional and social well-being. Remember, it’s okay to seek help and share your feelings.
The connections you make through these groups can lead to lifelong friendships, providing comfort and understanding on your journey. You’re not alone; within these communities, there’s always someone who understands what you’re going through.
UK Support Groups
Colostomy Association
www.colostomyassociation.org.uk Tel: 0800 328 4257 (24hr helpline)
IA: Ileostomy and Internal Pouch Support Group
www.iasupport.org Tel: 0800 018 4724
Urostomy Association
www.urostomyassociation.org.uk Tel: 01889 563191
The Breakaway Foundation (children from birth to 18 with bladder/bowel diversions/dysfunction)
www.breakawayfoundation.org.uk Tel: 01283 240253
Macmillan Cancer Support
https://www.macmillan.org.uk/in-your-area/choose-location.html
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