Explaining Ostomy to Others: The Power of Language

As a recent ostomate, I've been thinking a lot about how best to explain my situation to people. One problem, of course, is that it's difficult for others to get their minds around the situation. This seems to be a realm where language can be incredibly important.

For example, the term "pouch" just sounds better than "bag" to me - I've seen others express the same sentiment on this site. And to my ear, "appliance" just sounds like the euphemism it is.

When explaining the procedure to friends and curious coworkers, I've used such terms as "external plumbing," "sh**bag," "getting a soft serve nozzle installed," etc. I think a little bit of humor makes it easier for people to accept.

But seriously, sometimes I wonder if putting an ostomy in terms of a "prosthetic" or "artificial" colon/bladder/etc. would be helpful to the conversation. That's essentially all it is. Instead of waste emptying into our colon (or bladder), it empties into a pouch.

And I'd be willing to bet a well-kept, well-functioning pouch is actually cleaner than the average butthole
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Again, I'll mention I'm a recent ostomate; I might just be naive (still haven't had to broach the topic in a dating situation - ug haha). But in my limited experience, I've found using this approach to explain, as well as having a positive attitude about the situation, is pretty effective. I tell people not to feel sorry for the fact that I have an ileostomy, but to feel sorry for all the crap I had to go through before!

What do you think? Does this make any sense, or am I just rambling? I'm hoping to get a conversation on language going here that can help people who are trying to explain ostomy to others.

Dear Matts12,
As you say, you are relatively new to this arena. It not only takes a lot of fortitude but a lot of understanding just what it is all about. Some souls are relegated to wearing a pacemaker for the rest of their lives. While some may be somewhat bitter about this, considering the alternative, it's not all that bad.

I cannot advise you, merely express an opinion. Treat it for what it is—a necessary and extremely fortunate, (for us that have had it), medical procedure that has given us a new life. I personally approach my condition as just such a medical necessity. Most people will accept it for that and not try to embarrass you, or THEMSELVES.

Just sweat it out for a while,

and Good Luck
Jacksprat

matts12 ~ Great insights... Language is so powerful, and we can learn to use that power to our advantage — I like the way you approach "playing" with words and using humor.

Hahahahahaha. Fantastic!!

Oh, and by the way, matts12, wonderful post. I had a chuckle to myself as well as found myself agreeing with you.

Ken

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Matts 12, I don't doubt for a second you will overcome any and all questions coming your way, and bet the humor part will be a huge part of your success, Ed
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Using humor is definitely a good idea. I should use it more frequently.

I use "appliance" online because it is easier to type than "prosthetic." Also easier to say, but I agree it is just an artificial colon/rectum or bladder, as the case may be.

I was at first resistant to the word "prosthetic," but have warmed up to it. I also like "crapsack."

Usually, when saying "ostomy," the listener will chime in, "Oh, you have a bag." I am waiting for someone to say, "How do you live like that?" so I can respond with, "Watch this," and after a few seconds, "That was me being busy on a molecular level."

Hahah, Ken Lee, I remember that email. Hahah... I don't know, Pouchy, dunno mate.

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Ken leeeeeeeeeeeee lol POUCHYYYYYY XXXX Now I'm just EMBARRASSED

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Yes, what we call things often changes the way they are perceived. As far as I'm concerned, I have a pouch/bag/shitbag/appliance now. When I wanted to tell someone about it ... I said I had an ileostomy. If I got the blank

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stare I said I had a pouch now after my operation for Ulcerative Colitis. Then it usually clicked. If not ... hey they're not worth more 'splaining

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.



But how minor the naming issue is really hit home the day before yesterday. Our neice and her 2 kids were visiting from out of town -- one boy 7 months, the other a little girl of 2.5 yrs.



The girl is just getting into potting training. She is asked if she has to pee or poo every 10 minutes (seemed to me) and is doing a good job. She calls having to go poo, 'doing a stinky'.



Ok, so I'm in the washroom, sitting on the throne, emptying my bag .. she comes in (I had closed the door and not locked it - forgot we weren't an adult-only house). She walks up to me, looks at my bag and says "is that your stinky"?



I said 'yes it is'. That was it. Big smile and she left and I finished up. She accepts her Aunty Bea regardless of how Aunty Bea does a stinky.

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Wish we could all look at stuff with a child's viewpoint sometimes, don't you?

Awesome discussion and great video. I do not like 'bag' and for some reason my back gets up when people say it to me. I guess I don't feel there is the same respect that I feel for my 'pouch'. Could be potato/potato?
I think humor is key. When I first went back to work, I wanted people to be comfortable with me and not focus on my pouch/ileostomy. So I used those two words to let people know what I preferred. Then, to cut the ice on the subject when someone started to whine about something trivial (which was often), I would say 'look, I don't have a colon...when you can top that...let me know.' I don't say that anymore as I just don't think of it often. I agree words are so important and we each have our preferences. I think as long as we are feeling respected and are respecting others, then the words will work. Looking forward to seeing other posts.

I don't know how you date with an ostomy. I recently had my first date since my new ostomy.  I didn't tell him, but he figured it out and asked me if it was going to be reversed. He said he couldn't handle it if it wouldn't be reversed.  I am hoping for reversal in July....I do not plan to try to date until then.

apcat63 ~ "He said he couldn't handle it if it wouldn't be reversed." (it = her ostomy),

What if "She said she couldn't handle it if it wouldn't be reversed." (it = his attitude).

Good point three.

Brilliant Three! No kidding...
Apcat, he showed his ass as far as I'm concerned. I think you should date a lot while you still have the bag, as it can serve as a great litmus test for who is worthy of YOUR time and attention.

I am in murky water, but there are just some people who cannot deal with
things like ostomies. Either from a weak stomach or some kind of mental thing. Whatever,
I think that it would behoove one to evaluate how the person to date MIGHT react to the situation. A couple of questions asked about other medical problems with someone else.
If it sounds like there might be a problem, find someone else.

If it is a first date, you need not disclose the fact. Surely one can refrain from disclosing everything about their personal history. I went to church, restaurants, and various other social events, and no one was the wiser.

This is not advice, merely an observation,

good luck in your dating

Yet again, the ostomy's function, following its original intention, is a jerk detector.

Hi Matt,




Great post, and a good place to come for answers. I've had my surgery since I was 15, and that was more than 45 years ago. The age-old question of "when or who" to tell was discussed back then, as well as by all the young adults and then teens. I was one of them.



The best advice I can give you is to keep it simple/matter of fact. In dating, my guideline was, if his hands were going to be below my neck, then I wanted him to know "before" anything was "discovered". My best reply is that "I had been sick, and my colon had to be removed... I now have an ostomy, and wear an appliance/pouch/bag. Whatever word you feel more comfortable with. I used to use appliance, but now say pouch. Most people who understand will say "Ah...you have a bag". I'm not a big fan of that word, but I don't correct them. Philosophically, my response can be...Had my colon removed, so they "short-circuited me, and I poop out of a hole on my belly called a stoma...right into a pouch. And if that doesn't work...and I do get caught with "roaming hands"... I take his hand, put it over my belly, on my pouch/ and say...Look, I have an Ileostomy... I hope that's not an issue.

In all my years...dating 2x around, first as a teen and then as a 45-year-old divorcee, I've only had one guy..."run". He couldn't even finish lunch. Oh well...probably was a poor time to bring it up. Good luck to you...Figure out what you're comfortable with, and go with it.

Well Matt, I like to tell it like it is!

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Don't know whether to touch this or not, but I don't

know what you are talking about, S---bag. Maybe I am not supposed to?

Wow, I regret taking so long to get back to this post! There are some great replies here. And some funny stuff! So, a bit more time has passed since my operation, and I'm starting to think maybe the language itself isn't as important - though I still don't like "bag" unless I'm actually *trying* to gross someone out.

What I'm amazed to discover is those stupid posters on the walls in grade school classrooms are right. Attitude is everything! I think I feel more comfortable and positive in discussing my surgery on any level because so far it's helped me so much! I feel so much better than I have in years. I want to shout it from a mountaintop. I think if you have a positive outlook on the situation, the positive language follows pretty naturally.

That said, it's been brought up that there are some squeamish folks out there who just can't get their heads around it. I've read some awful stories on here, and my heart goes out to anyone having trouble looking on the bright side of things. Sometimes it's just hard to be positive. In those times, humor is a great tool to get you through. Like sometimes I don't quite know where I stand. I feel and look better now, and because of that, I have a bit more confidence. But I still have this bag of feces to deal with.

So sometimes I put googly eyes on my bag. Just to feel more comfortable. The whole concept of eye contact? Hugely important.

http://www.nbc.com/saturday-night-live/video/googly-eyes-gardener/1119102/

I love the concept of a "jerk detector" and Shitbag - right on, brotha!

Jack, he just meant he tells it like it is.

I am just back from a holiday in New Zealand, so I am a bit late on this thread.

I have had my colostomy since 2003 due to colorectal cancer. I had a hard time coming to terms with the end result for quite some time. However, I did eventually come to terms with it, but I still have moments where I am quite sure that I can smell myself or a bag suddenly fills, and I feel that everyone around me knows what is happening. They can't or don't, of course, but the feeling is still there.

Now I come to your question. How do I explain? If an explanation is called for, then I just tell it as it is. "I have a colostomy." It simply means that a natural function has changed due to uncontrollable circumstances. If any further explanation is required, then and only then do I go into any detail. Most people seem to know what an ostomy is, but the procedure that baffles most is irrigation. I irrigate every 48 hours and get freedom from bag changes for that period. My wife has discussed it with her family members, and all accept the fact that "Doug has a colostomy and sometimes disappears to the toilet for an hour to irrigate." There is no hard and fast rule as to the way we discuss these things; it very much depends upon the listener and their place in your life.

We all have that natural function; there is no escaping it. It matters little whether we sit on a toilet or defecate into a bag/pouch/appliance (call it what you will).

Good luck,

Doug

Kenny,  if that is what he meant.  I suppose that's a good policy.

why don't you Mime it?