Ostomy Support

Let me just say wow! Thank you social media. How times have changed, going back ten years when my journey began Facebook may have existed but not in its glorious form it does these days. The ability to reach out to others across barriers is astounding. I am so blown away by the magnitude of support groups, pages, blogs and websites that are out there. The time and effort that the ostomy community puts into supporting each other is astronomical. One of my main drivers for setting up the web page and blog was to ensure that other ostomates knew not only that there was support out there but where to find it. As part of that, I wanted to collate some of the amazing resources out there. So I simply searched the words “Stoma”, “Ostomy”,  and “Ostomate” in Facebook and filtered on groups and then pages. I was overwhelmed by the sheer number I found and wondered why I hadn’t done this earlier.

There was a multitude of groups to choose from, some small, some large. Some allow pictures in feeds others only in comments. Some are out and proud while others are a little more reserved. All of them are supportive, non-judgemental, accepting and knowledgeable in the ways of Ostomy life. So no matter where you are at in your ostomy journey if you are computer literate then there is support out there for you. I suggest taking some time to check them out and pick the site that works best for you. Many of the groups if not all of these are closed groups and you will need to request permission to join them. Another benefit of the closed group is that anything you post will only show in the feeds of those members of the group, so if you’re not at the sharing stage with non-ostomates then no concerns as its private, well as private as social media can be.

This list I discovered, is never-ending so I have only listed the top 50 groups and top 20 pages that showed in my feed with 100+ members/likes. I have added this list to my resources page with short descriptions found online.  Many of the descriptions are only a snippet, with full descriptions and more information available through the links connected to the group/page name.

While online support is amazing and can get you through many lonely nights. It’s nothing like meeting up and having a chat over a good coffee with some like-minded people. So if you do have a local support group in your area, I would highly recommend going along and meeting some other ostomates face to face. And if you don’t have one in your area, why not set one up. That’s exactly what I did. When I went looking for support groups in my local area and found none I used my contacts through the association in my state to start one. There are plenty of not-for-profit places out there that have meeting spaces available if you ask if you’re not too keen on meeting in a public place to talk about private matters. All you need is two people to start something that can grow into a dynamic support group. After 18 months of running the groups, they have grown from a small handful of regulars to a diverse crowd of ostomates with regular guest speakers and product representatives in attendance.

I have listed the known Australian support groups in my resources section. I am yet to verify all the information so I do suggest contacting the host for confirming date and times prior to rocking up and being disappointed. If you do know of any additional groups (both online and local) you would highly recommend please send me a comment with the link to the group and I will update my resources section.

PLEASE NOTE: While all these groups are fantastic, and are a wealth of knowledge shared by ostomates. It’s your responsibility to have any and all advice offered to you here checked with your medical practitioner and/or stomal therapy nurse before acting upon it.