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What Is 'stoma Stigma'?

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Posted by mooza, on Wed Nov 23, 2011 7:56 pm
Wow my little friend as its been called (love it ) is not really a problem i told my close family and friends they know about it i have no probs they have seen my very ill . And like anybody you love you see the difference in illness and health it made (not at the moment) so much difference to my heath i did things like my bugee jump bought rollerblades -mistake lol  know if not told and you hide these things it can ad does make people prisoners but i dont care if you like me or not wouldnt change if i had a stoma or not ....Educate your friends and family and they are fine as long as you are xxxxxxx okay im off to the beach xxx ......Ps if anyone knows how to get rid of fluid besides drinking water and fluid tabs pleaseeeeeeeeee let me know xx
Reply by Franicaa, on Wed Nov 23, 2011 9:38 pm
Stoma Stigma is just one of those things! Some people have it badly whereas others don't. I personally don't have it, though I choose to keep mine covered and undetectable all the time, I don't let the fact that it's there stop me from doing anything. Obviously, people (like myself) find it a bit embarrassing or awkward, or just annoying cause it's always there, but this shouldn't affect what you do with your life and who you're friends with. Only my family and closest friends know, and any guy who I get close to I feel has a right to know (just so he knows what he's getting himself into) but so far everyone I've told or who knows about it has accepted that without it I wouldn't be around and for that they respect it.
Now on the other hand, you're always going to find people- no matter who they are, how old they are, where they're from- who are going to have a problem with it. The only problem is, you can't always tell who these people are when you first meet them. My ex (who I thought was lovely, stood by me through my temporary ileostomy and all my problems) ran off when he said he couldn't cope with me having the bag for the rest of my life (cry me a river it's me who has to put up with it being stuck on me!!). I usually find the people with Stoma Stigma are the fickle people who haven't had to put up with any difficulties or tribulations in their lives.
Reply by Bill, on Thu Nov 24, 2011 10:18 am
Hello Beartice,
Thanks so much for posting this story. It brought a smile to my face when you related the reactions of the nurses. A ‘sigh’ and “Thank god” when you told then you could do the change for yourself.  If that’s not implying stoma-stigma I don’t know what is.
  I also loved the comparison with pulling out a boob if someone might be interested.  I also appreciated the concept of proving stuff to yourself
.  That seems to be part of the important process of coming to terms with what you’ve got and not stigmatising yourself for it.   A truly inspirational story for any newcomers to the site and an important reminder to everyone else.   I feel sure you have a few more anecdotes lurking in that history.  Perhaps you could share those as well when your ready.
Best wishes   Bill

Reply by Bill, on Thu Nov 24, 2011 10:42 am
Hello Franicaa,
Thanmks for your post. Your ex. sounds like a classic stoma-stigma candidate.  I agree that the sort of people who would qualify for such a title tend to be people who have not had to experience much in the way of problems in life. They tend therefore to be 'ignorant' and somewhat inconsiderate of the problems that others face.  However, we can always learn from their mistakes and move on in life whereas I suspect that they will be repeating their errors throughout their lives.
Best wishes
Reply by jenepooh, on Tue Nov 29, 2011 12:08 am
Wow...reading about you all... simply wonderful people.
Reply by kbd, on Tue Nov 29, 2011 3:12 am
The stoma stigma is very real. People fear the ostomy. I can remember being in grade school and someone pointed at a boy and told me "he pees in a bag and empties it in the bathroom". It was presented as some horrible secret. And I've sort of found that to often be the case, even to the point I was deciding whether to go ahead and die soon with Crohn's Disease or have the colostomy and live. As stupid as it sounds, it was a hard choice for me at the time. Thank God I had the colostomy, and it doesn't seem that big of a deal to me now. But it is a big deal to some people. They have trouble getting their head wrapped around the idea and I understand that because I've been there. It is just too bad I did not know it is a much smaller thing than it is generally considered as being. And it is too bad that more people don't know it is no big deal.
  Not long ago my niece visited and after coming out of the bathroom asked: "Why are there tic tacs on the back of the toilet?" My wife and daughter were sort of, "ummm..." not knowing what to say, but I laughed and told her they were for my bag, that somebody somewhere had decided that it would be a good idea to make our poop smell minty fresh by putting tic tacs in our bags Smile  I'm generally not backwards or embarrassed by my bag, only when lots of loud noise erupts from it in public does it embarrass me. There have been a few times when my wife and I were in serious conversation or had just ended a serious conversation and Pandora (my stoma) would have her say. I tell my wife: "Well now you know what she thinks of that." It cracks my wife up. I figure the less embarrassed I am by it the less embarrassed others will be as well, and I've got a sense of humor about it. If people are put off or embarrassed by my bag they can just kiss my stoma Smile
Reply by Bill, on Wed Nov 30, 2011 9:14 am
Thank you so much everyone for your contributions to 'What is stoma-stigma'?I have really 'enjoyed' (if that is the right word) your posts.   It is good to have the experiences explained in such detail alongside the responses to overcome any potential problems.    I do hope that anyone new to the site or new to having an ostomy will take heart from what you have said and let us know how they too have overcome stigma, predjudice and perhaps ignorance. Keep these posts coming as they are very instructive.  

Best wishes  
Reply by Bill, on Wed Nov 30, 2011 9:21 am
Hello all you people who have viewed this forum and those about to view it,
  In the spirit of  'constructive conversations'  the next (2nd) question would be 'WHO IS RELEVANT TO STOMA STIGMA'.
Please feel free to put one word answers if you want (whatever comes to mind) as this might enable people to be impulsive without necessarily having to tell us the whole story.  However, if you want to fill in the details this would always be welcome.
Best wishes  
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