What Is 'stoma Stigma'?

Posted by Bill, on Tue Nov 22, 2011 4:09 pm

Tess45 suggested that we try a 'constructive conversation' on this site.
Dawneagle has suggested a suitable first topic to be 'stoma stigma'.
So, I will try to facilitate this as a forum topic and see how we go.
To start with let's try and get some examples and what the concept means to people by asking the question - WHAT IS 'STOMA STIGMA'?

Reply by Past Member, on Tue Nov 22, 2011 4:48 pm

"After my surgery in Aug 2010, I was told that an aunt had 'one'.  I learned that she had the surgery many years earlier.  When I asked my mother about why, and some other questions - she knew almost nothing and was reluctant to discuss the subject.  A few months ago, the same aunt had to have her stoma moved.  Again there was a reluctance to discuss the subject.  I found out that she has had other issues over the years and NO ONE EVER TALKED ABOUT IT.  My family is among the closest families that I have ever known.  Why was this a taboo subject.  I  found myself wondering what an open conversation might have done to improve her life and acceptance."

The STOMA was one of the family secrets - one of the subjects that we just don't talk about.  I have tried to understand.  I just don't.  My mother really wanted me to have a reversal - be 'normal'.  A number of things led to my decision to not have a reversal. But NORMAL (or not) had nothing to do with it.  I just poop differently now. Not better, not worse, just different.

Over the past year, I have had family and friends that go quiet when the subject comes up.  Others say, 'let me look',  that is pretty amazing.  "How does it work". "How cute". "What a pretty little rosebud".  "I want to see it work".  It was shy and wouldn't perform on command.

What a difference in responses.  Why do some consider it a stigma. Why do any of us accept a stoma stigma.

I don't understand wanting to see it perform nor do I understand the avoidance.  but, it is all just different.

I do think about how much easier it would have been if my aunt could have been easy and open with her difference.  I have watched the relationship she has with my mother.  They are more easy with each other now that it is an open subject.   I wonder how much my aunt didn't interact with all of us because of her insecurities.

I have wondered what percent of people have stomas (any kind) and can't find data.  It is too secret?  There have been a few posts about famous people who have had stomas.  I like the "coming out" that is being done around the world.  A stoma is really just a part of who we are.

Reply by tess45, on Tue Nov 22, 2011 5:31 pm

In response to "Normal"
I think that a lot of people can only think about the fact that we walk around with sh8t in a bag that is sitting on the front of us -
that we must smell up close
that we can't be really clean
that we have an open wound
that sex would be disgusting or difficult or strange
that our lifestyle is limited in the things and places that we can do and go

I can remember that all my Sister could say was "you're too young to have that" and another friend saying and says all of the time still - until I smack her  good one LOL "You don't smell mingy" - She's one to talk, she always smells of old wine and smokes, eeck

In response to "Little Rosebud" little rosebud my butt - anything that has this much attitude and shoots sh8t out or it at an alarming rate is not a Little Rosebud, it's Mt Etna  LMSO

I can understand the curiosity of wanting to look and see - I myself suffer from this affliction and yes I know curiosity killed the cat - but satisfaction brought him back  - I would have no problem showing Stefan off and how he works - After all he did save my life - How else can people learn and accept unless they see, feel and touch so to speak

As a matter of fact I posed for the CAET web site with my Wound Care nurse (Awesome Woman BTW ) just go to the website and click on "About Us" and there I am in all my malnourished scrawny glory (had a fistula at the time as well as the ileo)

I have found that if you treat the Stoma with a sense of humor people are less uncomfortable with talking about it -

I always start with "You may think that I'm an assh9le but I had it removed" or "Don't make me mad or the sh8t is really gonna hit the fan" or 'Ever seen a monkey throw sh8t - I'm better at it then they are"

Not sure if this is the way that responses should go - let me know or give me an example

Hope there are laughs when this is read

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Reply by beatrice, on Tue Nov 22, 2011 5:39 pm

Ooh ... great topic for discussion.

I know an uncle on Mom's side had an ostomy. What kind (colostomy, ileo) ... couldn't find out - wasn't talked about. The most I got out of Mom was that he had 'lots of stomach problems and bleeding and then got a bag (later in life)'.

Have had people look at me in amazement when they hear I have an ileostomy ... the "but you look normal" look. Have had people say "I'd rather die than have that". Have had a few that say "a bag?" and then look at me as though they expect to see a knap-sack item on my body somewhere

. Very few can relate because they know someone close who has one ... one neighbour totally got it because her cousin "got one and never looked back".

There is a stigma. I think it's perceived (by the majority) as not a 'nice' operation/medical situation. Nor is it "in" (like prostate/breast cancer, diabetes, heart bypass/transplant, ... you see what I mean).

And it has to do with poo/voiding. There is an 'ugh' factor with anything associated with that end of the body. For some reason the fact that poo comes out of bums and has to be wiped isn't as 'nasty' as poo that comes out of the stoma and has to be dealt with.

Just my take.

Reply by DH, on Tue Nov 22, 2011 7:23 pm

I am not the least bit ashamed of having a stoma and wearing a poop bag over it. And as for people thinking that we are unsanitary I have news for them. I was told that we are more sanitary with our outer organ because we could do a good job cleaning the stoma . Wiping your but is actually more unsanitary.Because everything is internal and harder to clean. So we actually carry less germs and bacteria. When I talk to people about recovering from rectal cancer I am not ashamed at all to tell them about my colostomy and that it is permanent.I'me still the same person, I just have a different poop exit.They actually admire me for dealing with it.But then what other choice do we have. Happy Holidays

Donna

Reply by supernan, on Tue Nov 22, 2011 7:31 pm

This is brilliant. I have been suprised by people's reaction to mine as I don't make any secret of it, can't now even if I wanted to because of the hernia! On collecting me from hospital my 4 year old grandson greeted me with "My dad said you're a cow". This turned out to be because it had been explained that like a cow had 4 stomachs, I now had 2 bums!! Whereas my 4 year old grandaughter didn't want to talk about it or if she saw the top of the bag when I was in my pyjamas said she didn't like it. However, because I have been open about it , not forced it , the other day I said that I had to go to the toilet, and when I came out , there she was with a large bag of Jelly Babies stuck to her stomach with a plaster!! My daughter on the other hand still gets very embarrassed about it and although will talk about privately, hates me talking about it in public. The only thing so far I have not chosen to do is actually show people the stoma uncovered so to speak. I don't know why, but I tend to think of it as my bum and wouldn't dream of showing that off to the world, but I suppose really it should be like a scar. Everybody's different I suppose.

Really interesting subject though, thanks Bill and Dawn Eagle.

Reply by Past Member, on Tue Nov 22, 2011 8:33 pm

Supernan,

I love the stories about the 4 year old children. Children and their interpretations about things are always interesting.

I especially like how many 'secrets' are being 'outed' and understood as just different. Attitudes are shifting about many things. Maybe someone could write a children's book to tell the story of Ostomy ... we could suggest ostomy names ...... then we could give the book to the adults as well as the children.

Reply by 9mile, on Tue Nov 22, 2011 8:56 pm

Good topic.  Who do you disclose your personal information to in general?  I have been caught out revealing things about myself to people who don't really care to be blunt. But some people really do care and I have found revealing my stoma to be very liberating.

A dear friend of mine told me how she had helped her mum through recovering from surgery that resulted in a stoma.  She heped her mum at night with leakages and bed soiling, showered her mum and washed everything.  I told her that I had a stoma which surprised her.  Here I was thinking everyone i met could see, hear and smell by big secret.

One day my friend came for coffee and I asked her does she hear and see my bag.  She said "no" and asked to see it.  She looked at it and touched it, asking me where the actual stoma was.  I felt such overwhelming relief and freedom from fear that had been my companion for so long.  How cool was that?

Reply by bag_n_drag, on Tue Nov 22, 2011 9:03 pm

You guys and gals have helped me so much with the "Stoma Stigma" thing. When I had my emergency ileo in 12-2010; my colorectal surgeon told my mom and husband "she is MUCH too young to have this happen to her; usually only people over 65 have to go to these lengths and void in a bag!" Altho he is an EXCELLENT surgeon, that set a negative tone right off the bat with me and my loved ones, too. Luckily, we have all worked through most of that stigma within my close, immediate family.....but, there are still a few family members who will not talk about it and a friend or two who have avoided me completely since the operation. I have to ask myself "Would a real friend even CARE which end my poop comes out of?" And of course the answer is NO; so friend here is a subjective term!
I have gained so much wisdom from ALL ages on this forum and I really appreciate you all. You have taught me to go out and live my life to my fullest potential and to not be ashamed of my battle scars.....I am ALIVE today and for this I am MOST THANKFUL.
Happy Thanksgiving, my friends!
Darla

Reply by tess45, on Tue Nov 22, 2011 9:43 pm

Supernan - the story about your grand kids is really cute, because of the way that it was explained to them means perhaps their generation will be even more at ease with ostomates and with bowl disease and treatment

Reply by Primeboy, on Wed Nov 23, 2011 12:00 am

It's only a matter of time before "stoma stigma" becomes "stoma so-what"? Perhaps a famous Hollywood star or a public figure will emerge one day and let the world know about his or her situation. I may sound like a broken record saying this but the enemy of fear is knowledge. I am incredibly impressed by our young adult generation. There are actually a number of clips on Youtube featuring courageous young people talking about their ostomies and how they cope. They will bring us out of the dark age of ostomies and help us send this stigma to the trashbin of history.

Reply by panther, on Wed Nov 23, 2011 1:47 am

I've never kept mine a secret, I've had friends ask 'can I see it', when I show them my bag they usually say is that all it is. I'm 42 and still get told I'm to young to have one lol, even by doctors and nurses who should know better, my favourite trick lol is when I go to an ostomy event is to take my Mom with me the nurses always think it's my Mom who has an ostomy lol, it's always fun to see the look on there faces when I say it's me who has the ostomy lol.

Not sure about the US but in the UK we have data on how many people have stomas a year, a bit early in the day at the minute for me to remember though.

Reply by ambies, on Wed Nov 23, 2011 6:52 am

I for one if anyone ask me what operation i had i always tell them the real facts,no holding back ignorance is not bliss,once a friend ask me did i have a pipe stuck in my side for the poop to come out of into a bag lol,well my comment was mmmm dont think a hose pipe would be very comfortablelol after explaing to this person how the part of the bowel was attatched to my belly protrooding into a bag, the look on her face was interesting then it came out,what bowel sticking out your belly!!!! yes i said but its no shame i dont smell im clean and you carnt see it through my clothes. So it just goes to show, if and how many people realise what a stoma is.. .Stoma is Stoma..not a stigma...ambies....

Reply by Bill, on Wed Nov 23, 2011 10:50 am

Thank you all for your contributions to this 'constructive conversation'. It has been fascinating to read through your posts. My dictionary definition of stigma is:- 'A mark of disgrace or reproach'. Some of the posts I have read in the past indicate a process of working through one's own very personal feelings of stigmatising the 'thing' that has sometimes suddenly and without warning 'appeared' on their abdomen. It's as if some sort of malediction (curse) deserving of displeasure and discontentment has befallen them. This, I would perceive as 'self-stigmatising'. most of the comments on this post so far have reflected that you have moved on from these initial feelings to be much more in control of your own destiny and outlook. However, it would be good for the process of the conversation and for the sake of those with new ostomies to receive some comments recalling those early days and any self- stigmatising that went on. You could couple that with an outline of the postive path you have taken since then. Thank you all again for the great ciontributions so far and to remind you that there are usually eight basic questions to make up a full constructive conversation.. 'WHAT' is just the first of these questions.
Well done and keep the replies flowing. Best wishes Bill.

Reply by beatrice, on Wed Nov 23, 2011 5:16 pm

My earliest memories of hearing about ostomies (from professionals when I was in my early teens and 20s) was as something that was a last-ditch option. To be avoided at all costs - something that old people with bowel problems got. Clouded in mystery that was bogemanish. Never explained as a liveable alternative that might produce a healthier life. But I knew in my heart that I'd be going that route "when I was old".

Zoom ahead to my 50s when things were getting very bad (UC) ... I'm well read/informed but still could not make the choice. The devil I knew was better than the scary one I didn't. The decision was made for me when (at 54) I had an extreme flare, in hospital, contacted C-diff, colon ready to explode.

Early days in hosp -- thank goodness for the ET nurse who explained everything to me in a caring and matter of fact way. I had other nurses sigh in relief in front of me when I said I could empty/change my own bag. Actually had one say "thank God". Way to instill confidence, health professionals!

A few people who are close to me have seem my appliance/stoma. But it's not show and tell material as far as I'm concerned. Not ashamed, but I dont' go pulling out a boob for anyone interested in those either. Seriously though, I'm willing to talk about it with anyone who shows a real interest.

Early days when I was at home ... neighbours came to wish me well (our little group is more like friends than just neighbours) and I told them I had an ostomy. Left it at that unless they asked more, when I explained more but briefly. I was not ashamed. I was glad to be alive. I knew I didn't smell (I sure did when I was messing my pants daily). A few noises, so what.

I made sure to get out of the house as soon as I could after I was home. I knew in my head that no one could see the ostomy/smell the ostomy/hear the ostomy ... but it's almost like I had to prove it to myself. Gradually I resumed doing everything (and more) than I did before the operation. Now with the removal of that troublesome rectum ... I truly believe that I'm beginning a new life ... with a bag ... and I'm not old

.

I agree with Primeboy ... ostomies will be in the closet until we have a celebrity (think Michael J Fox and Parkinsons - which is also thought of as an old person's disease) come out or something like that.

p.s. when I was in the hosp, there was a boy of 7 who was getting an ostomy.

Reply 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
Bill

Reply by jenepooh, on Tue Nov 29, 2011 12:08 am

Wow...reading about you all... simply wonderful people. 3 Here I am, about to be 34 in less than two weeks and I just celebrated being an ostomate for over 14 years. Smile

No biggie. At least to me. It's been an interesting ride to say the least and for awhile before the bag came to be my best friend... I did everything I could to read up on it and get to understand what was going on. This saved my life. I'm so thankful for the stoma... my buddy. Now, at times we don't get a long and I get sick... hey, it happens to a lot of us. Again, no biggie...but I will NEVER ever go back to the way it was before. It's not a security blanket...it's a way of life for me. My Mom was really misunderstanding in the beginning about all of this...and that's where the stigma comes in for me... To me, it was a new beginning, a whole new chapter and my way of getting out of the Hell I had been in for the first 18 years of my life. To my Mom..I'm pretty sure she was thinking oh my...what are we going to do?? Can we handle this? What does this do? Can she pull this off? Is this doing more harm than good?

...and now? I'm loved for being me, because..in the end, that's what happened. I got my life back. Family knows, friends know.. and it's wonderful. The funniest thing about the stoma and being an ostomate was an experience at a previous job I had many years ago. I'm still shy at times when using a public restroom...(I know, silly)... so I kind of timed it, when I had the feeling that the room would be all mine. I went in to use the bathroom and heard someone come in not long after. Now, the way I empty my appliance, if you look at the stall, you'll think I'm getting sick in the toilet. This is the easiest way for me to do things for so many reasons... Anyway, they were curious and so one of them whispered to the other to check on me, and they stepped up on the toilet in the next stall and peeked over to see what I was doing lol. They were in for a rude awakening. MWAHAHHAAA...

Wink

In the end, the one who looking, was really curious, so when we had the chance, I showed her my bag and the reason why it's there and it made things quite clear for most of them. Made things easier at work, too.

I got off the subject I think... but I wanted to kind of say something , too. Smile

Hope you all have a very Merry Christmas and a Happy New Year in case I don't get to talk to you then... other things are going on where I might not be around in a week or two...

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

KBD

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
Bill

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
Bill

What is 'STOMA STIGMA'?

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