How the stoma community changed my life… | by Rachel

The stoma community is a wild and wonderful thing!

Unless you have a stoma, or someone close to you does, you probably wouldn’t even know it exists.

And when you do find it, you might find a lot more than you bargained for.

Nobody could relate to what we were going through

I first sought out the stoma community when my child had a stoma. At the time, I was yet to have stoma surgery myself, having had a stoma and reversal surgery as a toddler.

Little did I know that four years later, I would need that same community more than ever.

I felt very alone and isolated as a mum to a child with a stoma. No one in my everyday life was living the same experience.

While the mums at baby classes were talking about how hard life was with napping and weaning, I felt like I was drowning, in surgical problems and multiple hospital admissions a year for surgeries and medical intervention.

You just can’t relate to that, or feel like you can fit into their world. 

Discovering the stoma community

As soon as I started searching on social media, a new world of connection and community opened up.

Parents who felt alone, just like me, were blogging and sharing their hardships. Slowly, I started to realise I wasn’t the only one.

There were other people out there who understood, and there would be light at the end of the dark days.

Then, years later, I found myself needing the stoma community in a completely different way. I had my own stoma surgery.

I had gone from being the mum searching for advice about her child’s stoma, to being the person sitting there with a stoma of my own.

How to find stoma support and connect with other ostomates

There are many options when it comes to finding your people. You can access Facebook groups, which, like everything online, should be taken with a pinch of salt. Remember that people are often more likely to share their difficult days than their positive ones.

You can simply have a profile and view what others are sharing; there is no need to comment or interact unless you want to, or you would like to support the person sharing their experience.

You can also see if there are support groups to attend in your local community, or further afield if you are willing to travel. These may be advertised online, or you can ask your stoma nurse about local support.

If there is someone sharing their experience who says their inbox is open, send a message and go from there. You never know where one message might lead.

There is no right or wrong way to find your stoma community. For some people, it might be an online group. For others, it might be meeting another ostomate in person. And sometimes, it might simply be knowing that someone else understands what you are going through.

Do you need to share your stoma journey on social media?

I think it is a misconception that you need to share a lot of your life on social media to find a community.

My view of what I am comfortable sharing has definitely changed over the last 10 years. People change, and their priorities do too.

How often you want to share, and what you share, is completely up to you.

You never know what is happening behind closed doors, so be mindful if you don’t get a reply when you reach out to someone. It may have absolutely nothing to do with you.

If you want to share part of your journey, great! You will be helping others for sure, and you may connect with people who can relate to you. But never feel pressured to share more than you are comfortable with.

There is so much to find across social media, from YouTube videos following people’s lives with a stoma, to ostomates appearing in the news, as well as well-known public figures who openly advocate and share their experiences.

You don’t have to share your whole life to be part of the community. Sometimes, just knowing that someone else out there understands can be enough.

Making friendships through the stoma community

I am one of the lucky ones who has made friendships through the stoma community that have continued outside of it.

What can start as a message or a comment can turn into a real-life connection.

I have attended in-person meet-ups, worked with fellow ostomates through Eakin, and I look forward to inviting some of these friends to my wedding next year.

You can be sure I will be planning an ostomate basket in the toilets so we have everything to hand!

Why connecting with other ostomates can be so important

Not many people can say they interact with a fellow ostomate in their everyday life. The first time I attended an in-person meet-up, the feeling was euphoric.

I remember being in a room full of people who just got it. I didn’t have to explain what a stoma was, why I might need to take a bag of supplies everywhere with me, or worry about a little bulge under my clothes. Nobody was going to bat an eyelid. There was something incredibly freeing about that.

Meeting up with friends with a stoma might sound like the perfect place to have a moan and exchange stoma stories, but that very rarely happens!

Of course, the occasional stoma story comes up, but when you feel completely at ease and accepted, the conversation opens up to everything else. We talk about family, work, relationships, weddings, holidays and everyday life.

And that is where real friendship can blossom. A stoma might be the thing that brought you together, but it doesn’t have to be the thing you spend your friendship talking about.

Finally…

If you are at the beginning of your stoma journey, please don’t put pressure on yourself to have it all figured out.

Finding your community doesn’t happen overnight, and if you are lucky enough to connect with another ostomate, I bet you won’t spend that much time talking about your bags!

A stoma may be a part of your life, but it doesn’t have to become your whole life. There is so much life to be lived, places to go, things to do and memories to make.

One day, you might find yourself being the person someone else comes across when they are searching online and feeling completely alone.

Rach
@gutsy.mum