Connecting With Online Ostomy Community Groups

If you have an ostomy, you may want to connect with others in the ostomy community. Read about how Gill Castle accessed online ostomy community groups, and about the benefits she experienced.

Get tips on how to find an online ostomy community group that is right for you.

“Skydiving. Scuba diving. Swimming. Cycling. Running. Kayaking. Camping. Sex.” As I was lying in my hospital bed the morning after my emergency ostomy surgery, I thought about all the things I didn’t think I could do with a stoma. I had no idea what to expect about life with an ostomy. All I knew was that my abdomen was very painful, and I was pooing into a bag attached to it. My mind couldn’t take in the enormous change, and I felt very vulnerable in that ward, on my own.

My family and friends were extremely keen to support me in the days and weeks following my surgery, but none of us knew how to live with a stoma. I felt very alone, depressed, and overwhelmed. I needed to find other people like me, who truly understood what it was like. I needed a new “stoma family” to help guide me.

Going online to find ostomy support and connection

Previously, I had never sought support online for anything, as I hadn’t needed to. I was fiercely independent, and the idea of discussing toilet issues with strangers was definitely a step out of my comfort zone. But I knew I needed to connect with other people who understood. What would they be like? Would they be kind? Would they laugh at my ignorance? I logged on and decided to find out for myself.

The first thing which struck me about the support websites was just how many there were. Thousands of people are living with ostomies in the UK, maybe even someone around the corner from you. Very often, however, people hide their conditions, and you would never even know they were there. By joining an online group, you have access to others who understand your situation, whom you would otherwise never be able to find.

A source of ostomy information and reassurance

The people in these online ostomy community groups helped normalise my new life. It was reassuring to know that feeling overwhelmed at the beginning was very common. I started to feel less alone and became more confident in asking questions.

A lot of my initial questions were about the practicalities of going about my daily life with a stoma. What items did people carry when they went out? Any handy tips for changing a stoma pouch in a public place? How do you cover the smell? What do you do about the noise the bag makes? Everyone was always keen to help and share their own ideas; there were always many responses to my questions. Nothing compares to advice from people who are in the same situation as you are.

Giving back to my ostomy community group

After a long time on the sites, I realised that I could help answer questions, too. There is no better feeling than seeing someone ask a question and knowing what the answer is – to be able to give them some tips and help them navigate a problem they are having with their ostomy. It makes you feel even more bonded with an incredible community, and privileged to be part of it.

A Facebook group for ostomates in the UK

The Hollister UK Ostomy Community Facebook group is a place for UK ostomates to share experiences and knowledge. It is available to people who have an ostomy, as well as their friends and family members. Those living with a condition that may lead to stoma surgery in the future can also join. As is common with other online communities, members must agree to abide by the group’s rules. These include no sharing of personal contact information, and absolutely no hate speech or bullying. The rules are all aimed at making members feel safe and comfortable in their new online community.

The best thing of all about online support sites – aside from providing their members with access to a wealth of advice, guidance, and knowledge – is the sense of community they create. No one judges anyone. I find that people with ostomies are an empathetic bunch – we all have a stoma because of some form of trauma, and that can bring with it a sense of empathy for other people.

Giving me the confidence to step out of my comfort zone

Glancing back to my first sentence, when I was ruminating about all the things I thought I couldn’t do with my stoma…well, I have now done all of these activities, and more! None of that would have been possible without the support, encouragement, and compassion of people on those support sites. Had I not entered the world of online ostomy community groups, I would not have tried half the things I have done with my stoma.

So, log on and find your new tribe!

Financial Disclosure: People who provided testimonials received compensation from Hollister Incorporated. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person.

The person pictured is not an actual user of the Hollister product.