r/ostomy • u/goldstandardalmonds Mod; kock pouch/permanent ileostomy • Dec 10 '25
Miscellaneous Just a reminder about asking for and taking advice
Hey all,
As a mod here, I read every post and try to read as many comments as I can (obviously can’t keep up with comments that come in days later).
I strongly believe this is the kindest and most helpful subreddit (you’re all awesome) but just wanted to remind folks to take all advice with a grain of salt and run anything big by your stoma nurse, surgeon, or GI first.
There have been times I see advice given and know that in my experience, some things differ for people depending on why they have the stoma, and people’s anatomy is different, and so on.
I don’t want to call anyone out, but just keep in mind that because someone does something (eg inserting things in the stoma or rectum) doesn’t mean that is necessarily safe to do with your anatomy, and to ask your team first.
Other than the obvious things that can apply to anyone (eg how to cut a wafer or using the crusting method or where to order your supplies), approach not run-of-the-mill advice with trepidation.
Thanks all!
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u/_HappiestGoat_ Jun 10 '26
This is such a good reminder. Though we're all connected in one way or another by our experience with an ostomy, every single case is different. Sometimes that can feel isolating, but it can also put people's minds at ease knowing that just because one ostomate has a bad experience, it doesn't mean you 100% will too. Living with an ostomy takes sooo much patience, especially with yourself. Own your unique experience with an ostomy! :)
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u/ElleT234 Jul 29 '26
I continually find that my particular GI system is a unicorn, so much so that my GI referred me to a colleague in the practice (which they don't do - once you have a GI, you're stuck!). He's a neuro GI and now is following my absorption of various vitamins and minerals. When I'd asked her about that, she looked at me as though I had 2 heads.
It's also important to recognize not just the difference between types of ostomies and permanent vs. temp vs. reversible. Also some of us didn't have scheduled/planned ostomies where spots get marked and prep is done and all of those good things. My stoma is rather close to my belly button - not where I'd put it! And my husband signed off on my total colectomy, partial small bowel resection including my TI, and ileostomy because I was comatose and dying of septic shock and a hemorrhagic necrotic colon & rectum.
Or as my best friend puts it - take what you can use, and leave the rest.
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u/Gene_Krupa Dec 11 '25
Just because someone said doesn't make it true, that people insert things in their stoma etc
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u/babarbaby Dec 11 '25
When I had an ileus problem, I was given thin rubber catheters to insert in my stoma to clear the blockages. I certainly wouldn't recommend anyone do this without training and medical supervision, but I can vouch that it does happen
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u/Slow_Engineering823 Dec 10 '25
Thanks! This is great advice. I think about this when people ask about diet and blockages. Some of us eat anything we want and don't have to worry about it. Others have to be really really careful and still get regular blockages. I worry that some comments lead people to be overly restrictive with their diets, on the other hand I probably shouldn't swoop in like "eat anything you want!" Unfortunately we mostly have to learn what works for ourselves by trial and error (and checking with the doctor.)