Explaining the Sensation of an Ostomy: How to Put It into Words?

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w30bob

Hi gang,

I'm wondering how you describe to folks what it feels like to have an ostomy... meaning what is it like to have your poop coming out of your abs? Seems I get asked that at work every once in a while, like I did today. I usually just say "How can I describe something to you that you've never experienced?" Knowing that doesn't help, I then say something like "It feels like something always leaking out of me from my abs... do you know what I mean?" They don't... and I just get that "deer-in-the-headlights" look... and we change the conversation. Now I'm short gutted, so I am almost always having output, where most of you guys have more bowel... so your feeling may be different... but how would you describe it?

Thanks,

Bob

lovely

I would just say it is not something I would choose if there had been a choice. It does have some good and some bad points. It did save my life and it helps if you are out and not close to a restroom. It is good if you have gas because there is no smell. And you really don't want to hear the bad points. Stay safe.

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Bill

Hello Bob. 

I am one of those people who would take great delight in explaining things to people. However, I usually choose carefully how I do this with each 'audience'. This is because  some of them are not asking in order to receive an accurare and honest answer about the subject, but are simply trying to make a conversation. Sometimes I reply by saying (jokingly) "Do you 'really' want to know about my shit?"

Mostly, I will keep it lighthearted and lead into the educational stuff if they remain interested long enough. However, a number of those who ask (how I 'feel') are susceptable to a bit of rhyming verse, so I would keep the face to face conversation to a minimum and offer for them to loan one or all of my books on the subject. 

Alternatively, I will upgrade and maintain the conversation by asking questions about how 'they feel', when they have some sort of medical , social  or mental condition, which ebbs and flows in terms of draining your will to live. 

After a lifetime of educing people's feelings, and helping them to come to terms and manage them, This latter approach comes as second-nature to me. What I have found, is that most people love to open up about those things which bother them in life, 'if' they think they have found someone who will genuinely listen with empathy and understanding.

The question that starts the conversation, is sometimes a way of asking permission to share their own angst with someone who might understand - because they are percieved to be going through similar things themselves. 

I have developed and enjoy the 'art' of sketching concepts out on scraps of paper, so sometimes I will draw a diagramme with the pretext that I would like them to know more precisely what it is we have to deal with in practical terms. This does not just apply to stomas, but to other conditions which affect how people 'feel' about themselves and their lives. Giving people something to look at, whilst having a conversation, will often help in obtaining and retaining their focus on the subject (at least in the short-term).

There are also a multitude of ways that I am able to change the subject, without seeming to be rude.  I think that we, as a community, should develop a repertoire of brief 'jokes' about stomas and stoma management, that can be performed in these sorts of circumstances. so that we can keep conversations as lighthearted as possible. Maybe this could be a 'Bob' project, once the kittens have been dispersed to new homes. 

Best wishes

Bill 

ron in mich

Hi all, the way I have described it is that if you have a bare arm or leg and a fly lands on you, it's just a sensation of your skin moving.

xnine

I do not feel much, it is only when I check my bag that I know something has happened. How can one not know? You just can't, there is no feeling there. For me, it is such a mental thing. You know it is there but it is nothing. It is like a living tattoo. If you do not look at it, you hardly know it is there.

I have a colostomy.

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
w30bob

That's interesting. I definitely get a physical feeling/sensation/whatever you want to call it when I output. Especially if it's chunky, because it partially blocks, builds pressure....and POW! Out she comes. That might be because my stoma was probably made from my duodenum, where normal ileostomies would make the stoma out of ileum........so maybe the nerve structure is different in those two parts. I'll have to do a little digging.........

Later,

Bob

lovely

It is strange sometimes I know when the output comes out and sometimes I don't.

bj

I've been asked the same question. I can feel it most times (not all...maybe 60%). I tell them it feels like a tickle moving along inside my abdomen. And it does. Reminds me of aliens moving around sometimes.

Zed12

Hiya ostomates.

How does it feel?

Well, wind is sometimes like little popping feelings which I can only guess I feel because obviously it's being released and as such there is less pressure just like a real bottom burp. Sometimes they are loud sometimes quite fierce, always funny!!

As for pooping, for me (I have an end ileostomy and his name is "Stan the Stoma!) it's usually quite watery and I don't feel anything, nothing, nada, zilch! If it does get a little thicker, kinda like toothpaste I do feel it working its way out but again I don't usually feel anything. I gotta keep a close eye on Stan though when I'm doing a bag change or drying from a shower (without my bag on) because he can be a little shit! (Pun intended lol!) He will catch you off guard and poop all over you if you're not careful!

Why call him a him and why call him Stan....... because men* are arseholes and always shit on you!! Lol

Thanks for reading.

Love Zena-Dawn. xxx

*Not all men of course, there are good ones out there, I know, I got one. xxx