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Crohn's Disease Forum » Surgery » Stoma Subforum » Biggest ostomy fears


12-26-2013, 07:48 PM   #1
nogutsnoglory
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Biggest ostomy fears

So we all probably have that dreadful fear of the bag just popping off and people seeing it as we stink and poo out in public. As we get used to our bags we realize it's highly unlikely this horror scenario will occur.

What are some of your biggest ostomy fears?

Mine is the fear/paranoia that I'll forget to tuck my pouch back into my pants and will walk out in public and become humiliated by people seeing it.
12-27-2013, 08:13 AM   #2
Kat24
 
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My biggest worry is that I won't wake up in the night to empty and end up having an explosion in bed (my husband also worries about this!) but thankfully it hasn't happened .... Yet!!
12-27-2013, 03:07 PM   #3
nogutsnoglory
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Kat they have high output containers that can be connected to your appliance and drain all night. It's not lovely but maybe if you have a lot of output it could ease you and your husbands minds.
12-27-2013, 03:52 PM   #4
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So we all probably have that dreadful fear of the bag just popping off and people seeing it as we stink and poo out in public. As we get used to our bags we realize it's highly unlikely this horror scenario will occur.

What are some of your biggest ostomy fears?

Mine is the fear/paranoia that I'll forget to tuck my pouch back into my pants and will walk out in public and become humiliated by people seeing it.
I knew someone who that actually happened to - the whole bag fell off. Though not in public, in our house (everyone managed to laugh about it though ).

As for your other fear - maybe I shouldn't admit this but I usually don't tuck my bag in. My stomach's still a bit sore from the surgery, so the last thing I want is tightness if the bag is tucked in and then inflates or fills. I tuck it in only when out in public, at home it's always out (even with a house full of relatives for Christmas). I can't see that it would bother me if it was out in public? Most people wouldn't even know what it was. And I'm also guilty of getting it out in public (in a doctor's waiting room). Because it was new and I was still learning, so when it did something that felt or sounded weird I wanted to check it right away. My priority is keeping everything clean and hygienic. So if there was any possibility it might be leaking, I'd check. I'd much rather have avoided a leak by having a good look at it when I felt it bubbling or whatever than keep it hidden in case people see it. (It wasn't leaking, but if it had been I'd have been glad to have realised right away.)
In more formal situations I'd care more about it being visible. But I'm most embarrassed by the fart noises it makes. If that happened in a church service or something like that, I'd feel pretty mortified.

But my biggest fear is my ostomy landing me in hospital. I'm scared of getting a blockage. I've had so much new pain the last few days, and right now I'm dreading it getting to the point where my mum insists on driving me to A&E. It feels like I only just got out of hospital. I don't want to go back again!
12-28-2013, 04:30 AM   #5
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Thanks nogutsnoglory that doesn't sound too appealing!usually one of my children wake me up in the night for something so I empty while I'm up.are leaks in bed because its too full a common thing?
12-28-2013, 09:39 AM   #6
nogutsnoglory
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In the beginning I had many leaks in bed but it's uncommon once your stoma settles and you get a hang of things. Most people need to empty during the night.
12-28-2013, 05:25 PM   #7
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UnXmas--I never tuck mine in, at home or out of the house.
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12-28-2013, 05:50 PM   #8
VeganOstomy
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I have two fears. The first, while not directly ostomy related, is the fear that Crohn's disease will come back and take away everything I have again. There's not much left to cut out of my gut and since I haven't responded to medication in the past, some breakthrough treatment would have to be available if I ever flare again.

By biggest ostomy-related fear is losing the ability to take care of my own ostomy - either because I'm too sick, too old or have lost my mind.
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12-29-2013, 06:27 AM   #9
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By biggest ostomy-related fear is losing the ability to take care of my own ostomy - either because I'm too sick, too old or have lost my mind.
I have a progressive neurological disease, so for me it's quite possible that this will become my reality. I'm sure most of us will eventually reach this point - though, hopefully, for most it will be a brief period at the very end of a very long, healthy life. For me it's quite likely it will come a bit sooner. When I had my ileostomy surgery, my stoma nurse taught my mum how to change my bag, in preparation for when I can't manage.

I am much happier knowing that should I ever be unable to care for myself, I'll have the stoma. It seems somehow preferable to have someone else dealing with a bag than dealing with defecating the normal way. Especially since for me the "normal" way meant hours of mess and pain. I think it would have been horrifying to be relying on someone else to help me through that - they wouldn't know how painful it was, or know when I needed to have a rest and lie down on the bathroom floor, or when I thought I was finished and then had to get back to the toilet very promptly. Usually I didn't know myself whether I was done or not! It would have been impossible to manage going the normal way if I didn't have the mobility to balance on the toilet for long periods, etc. A couple of years ago I hurt my back - it was a minor thing that resolved, but it was incredibly painful for a little while. Hours straining on the toilet with a bad back was excruciating!

The sicker I get and the more health problems I acquire, the more I'll appreciate having the ostomy. You can just lie down and someone can change it and clean it for you. Of course I value independence, but if there comes a point where that simply isn't possible, an ostomy seems to me the easier and more practical option, by far.
12-29-2013, 06:41 AM   #10
UnXmas
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UnXmas--I never tuck mine in, at home or out of the house.
I should probably add that when I'm at home and have it out, my bag isn't see through, so the poop itself is not actually on display. I guess if it were that could be a bit off-putting for the poor people around me trying to eat their tea or whatever. They just see a flesh-coloured bag.

(Btw. - this got me wondering; if you're black do they give you a bag to match your skin? I've assumed the peachy coloured bag that seems to be the absolute standard is made in that colour because whoever designs them thinks that's the way to make them as discreet as possible by suggesting it will be camouflaged against your skin... but it's ridiculous to assume that everyone's skin is that colour. Or do they just happen to be peach for no reason? Now I feel like starting a business designing ostomy bags with pictures and patterns on them, where people can select any design they like. )
12-29-2013, 07:51 AM   #11
VeganOstomy
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(Btw. - this got me wondering; if you're black do they give you a bag to match your skin? I've assumed the peachy coloured bag that seems to be the absolute standard is made in that colour because whoever designs them thinks that's the way to make them as discreet as possible by suggesting it will be camouflaged against your skin... but it's ridiculous to assume that everyone's skin is that colour. Or do they just happen to be peach for no reason? Now I feel like starting a business designing ostomy bags with pictures and patterns on them, where people can select any design they like. )
Pouch covers :-) You can get them in whatever color you like.



12-29-2013, 07:57 AM   #12
VeganOstomy
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When I had my ileostomy surgery, my stoma nurse taught my mum how to change my bag, in preparation for when I can't manage.
You're lucky to have that option, and I hope you remain healthy enough that it doesn't become necessary to use her. In my situation my wife would be the only one I could use, but I already get enough put-downs for being sick or being told how inconvenient my illness is for her. I'd rather it never to the point where she had to help manage my ostomy.


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