Online ostomy groups – the good, the bad, and the ugly

Online groups can be a wonderful source of information and support. You post a comment or question, and ostomates from around the world respond, usually within minutes. Here are some tips I’ve learned on how to find the group that’s the best fit for you, and how to get the most out of it.

Identify your needs – Do you mainly just want to chat with others who have ostomies, where you’ll feel like part of a community? Or are you looking for focused answers to questions that address your particular needs? Ex., do you only want to talk to others who have a child with a stoma? Or people who irrigate? Or ostomates who share the same medical condition, like IBD or Crohn’s? The list goes on and on. Whatever your interests, broad or specific, there’s something for everyone.

Privacy concerns – Online support groups like those on Facebook or Twitter are typically “closed.” That means once you join up, anything you post within that group only appears on the Facebook page or Twitter feed of other members. So you can talk about something personal, like your poop or your love life, without worrying that your co-workers and blabbermouth cousin will be hanging on every word.

Message boards and discussion forums are a little different. Many are semi-private. That means you (and everyone else in the world) can read the posts and responses of others, but you have to join the group in order to post something yourself.

Finding a group – On Facebook, you can search through their groups to find the ones related to ostomies. The same with Twitter, only their groups are called “lists.”  Use Google or other search engines to find message boards or discussion forums. Either way, you’ll have a lot of choices.

Lurk for a while – Once registered, you may want to spend some time lurking (reading the posts and responses of others, but not posting anything yourself). This will help give you a good feel for the group, and if it’s a place you’ll feel comfortable. I’ve joined and left two groups in the past – one because it turned out to be unwelcoming to people of all faiths, and one because it permitted a “humorous” cartoon graphically depicting child sexual assault (I swear!). Happily, I found a few  others that are a perfect fit for me. And remember, you can lurk forever if you’re not comfortable posting. There’s no requirement that you must post anything, ever. You’ll still learn a lot.

Is it well moderated? – Most groups have individuals called moderators or administrators who establish rules, monitor all posts, and intervene if there’s anything inappropriate. That means deleting offending posts, and warning or even blocking someone who breaks the rules. You can’t tell immediately how well moderators are doing their jobs but it’ll be evident soon enough. If they’re allowing posts that make you uncomfortable in any way, find another group.

Best uses – Ostomates in online groups are pretty well versed in the practical realities of life with an ostomy. Collectively, the members have years of hands-on experience and are better equipped than most medical professionals to answer questions about sleeping, showering, dating, having sex, dressing, travelling, returning to work, dealing with emotions, etc. Honestly, I can’t imagine how ostomates figured this stuff out by themselves in the pre-digital age!

But medical issues are another matter. Inexperienced group members may recommend something that worked for them, without taking into account that you might have a different type of ostomy or skin irritation or underlying condition. So what they suggest might not help in your case. It could even make it worse (not common, but it happens). Other members, with more experience, may provide solid medical advice that any ostomy nurse would be proud to offer. But how do you know? If it’s a medical issue, best to check with your doctor or ostomy nurse first. If that’s not possible, at least do a little research yourself to see if the online advice seems appropriate in your particular situation – or at the very least, not potentially harmful.

Overall, online ostomy groups are an incredibly rich source of information and support. It’s like joining a private club with members all over the world. Only instead of a secret handshake, we recognize each other in public from the stealthy ‘ostomy patdown’ signal – a discreet patting of a small bulge on the tummy. We’re out there, in the thousands, ready to offer a helping hand or just listen to a fellow club member. So I hope you join up and take full advantage of this wonderful resource.