Making Connections in the Ostomy Community

Making Connections in the Ostomy Community

I share a lot about my experiences of meeting fellow ostomates that I have connected with through my social media platform. It can be a very daunting prospect and something that should be done in a safe, considered environment. Ensure a loved one has your location and can easily contact you and visa versa. Safety first always. Meet in a public place or even better bring someone along or meet in a group.

Meeting someone with a similar illness to yourself can have many benefits:

1. It gives you a chance to share your story, what you have been through and offload. Gage if the person is in a good place to hear it, as you do not want to trigger them to be reminded of their own bad experiences. Check that they would like to hear it first. Be prepared to have the same shared in return. You may find you have gone through the same creating a feeling of solidarity. Sharing is a form of therapy giving you the opportunity to get off your chest anything you have been harbouring that you feel ready to let out. Think of it as a spring clean for your mind.

2. If asked for advice or your opinion on something, always be clear if you are not medically trained and share your experiences as you lived through it in order to give them a fresh perspective. Don’t give direct medical advice as this may come back on you if it was to have a negative result, or no result at all at the risk of upsetting the person or causing bad feeling.

3. Friendships can blossom from such meetups. I have made many friendships for life from our shared experience of living with a stoma. If you are the type of person that is tactile and likes a hug and the other people you meet are the same, those hugs between your shared experiences can mean so much. It gives you hope and I have left many a meet up feeling incredibly at peace. A sense that everything is going to be ok. They have gone through what they have and I can do the same.

4. There are common conditions in the ostomy community that are the main contributors to needing stoma surgery, however it is very rare to find two individuals who have gone through exactly the same. Connecting with others is an opportunity to share and educate others. Learning of others reasons for having a stoma can bring perspective knowing you are not the only one so you feel less alone.

5. You may find therapies, support groups or classes that you didn’t know about before. There are some PT’s for example who have stomas that offer tailor made fitness classes and 1 to 1 sessions with the knowledge and experience for you to get the most out of your workouts during recovery. They can be hard to find and may be more discoverable through word of mouth. Myself and Ru @ru.talks.ibd started ‘Gut Squad’ meet ups last year and are planning another this year. We had the joy of welcoming over 20 ostomates from across the country to a venue in Birmingham which was pure bliss connecting with so many we knew from Instagram. Maryrose @big_c_stomaandme holds classes in Ireland where she supports the rehabilitation of ostomates. Be sure to follow her and keep up to date with what’s new from her.

6. A meeting can result in having your feelings validated. Friends and family with the best intentions (as much of a support that they undeniably are), can never fully sympathise as much as a fellow ostomate. I remember talking to someone for the first time at a meet up and feeling a huge weight lifted. They just get it. You don’t need to go into what a stoma is or how it works, just simply be and share how you felt as opposed to explaining things practically which is what most individuals want to know. Sharing funny stories, accidents and near misses with your bag gives you a dose of those much loved endorphins which are always welcome too!

Until next time, Rach @gutsy.mum x