Ever experience discrimination or ridicule?

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redspout
Regular Member


Date Joined Sep 2007
Total Posts : 27
   Posted 9/29/2007 9:42 PM (GMT -6)   
I hope this may not be too touchy or personal a topic to discuss.

I'm just wondering if any of you have experienced any kind of discrimination, ridicule, or biased behavior due to the fact that others know about your bag?
If you have, I'd be interested in hearing some of your accounts. How did you deal with it. Ill relate some of mine.

My blood family seems to have accepted my change. My mother, brothers, aunts and cousins seem to treat me like anyone else, and to be honest, that is something that they will always have my gratitude for. I don't want to be a special case, or a source of whispered jokes. I want to be treated like I am, a man. My relatives seem to be on the ball on this one.

My problem comes with meeting new people. More specifically, someone that I might like to date, get into a relationship with, or even just to make new friends. It seems to me, that as soon as I mention that I have to wear a bag, the look in the eyes change, be it a potential mate, or even a new found friend, the results are the same. A polite smile, a ¨Ill call you sometime¨, and then I never hear from them again. I swear to you, if I was able to keep my bag a secret from some of these people, they would still be friends, or lovers.

Please dont get me wrong. I dont have a problem with the fact that I have to wear a bag. I have accepted it, and I am glad that I had this kind of procedure to save my life. The problem I have stems from OTHER people not being able to understand ¨the bag¨.

If any of you ever run into my kind of problems, please share how you dealt with it. It may make a world of difference.

Thanks
"The world hates change, yet it is the only thing that has brought progress."
-Charles Kettering


"He who rejects change is the architect of decay. The only human institution which rejects progress is the cemetery."
-Harold Wilson


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 9/30/2007 6:59 AM (GMT -6)   
I can answer honestly 'no' to this question. Even when I made a mess all over the pavement once while waiting for the school bus, not one of the other kids ever commented although they couldn't have failed to notice.

I have seen people give a quick glance at my tummy after I've told them about my bag, to see if they can see anything, but I guess that's just a natural reaction to being told something like that about another person. No one has ever made a negative comment about it to me. Instead, I usually get 'wow! I would never have known!', or (the comment I DO hate) 'you poor thing, you're so brave' (I don't consider myself brave, without it I would have died, there was no choice really).

People seem to just accept I have a bag without a problem. If they ask, I will explain it in more detail to them. Never have I had anyone react in a negative way, even with boyfriends (who will usually ask 'can I hurt it', 'does it stop you from doing anything' etc) for which I'm eternally greatful.
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/30/2007 7:23 AM (GMT -6)   
I feel very blessed that I've never been rejected or ridiculed because of my disease or ostomy. I'm married and have worked as a receptionist at a large church for 10 years. Everyone I know witnessed how sick I was with Crohn's for seven years before I had ileostomy surgery. I would lose 30 pounds quickly, be hospitalized, and then have to be home recovering for a couple of weeks. It happened more times than I want to remember.

Since I was on the prayer list for my surgery, most people at church know about it, and they have been very supportive. They tell me how healthy I look now and how happy they are that I'm not sick anymore. My husband and family are very supportive, too.

If you tell someone new about your situation, and they are that shallow to not want to get to know you better, then you don't want to be friends or in a relationship with them anyway. It's better to find out early on what they are all about, so you don't waste your time and then find out how superficial they are later on.
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/30/2007 8:08 AM (GMT -6)   

Cecilia,

I have been very fortunate as well.  I have made and have many good friends over the years who are very understanding and deeply grateful to see me healthy again.   My new friends just are amazed at how "normal" a life I can lead - obviously, they know very little about an Ostomate!  We can be really perservering, eh?!   

Shaz,
 
Yep, me too - I get the glance at the belly and the comment, "Really, well you can't tell" or "No way, where?" depending on how close the friend has become.  I have no issues about anyone knowing about it.  I am grateful for it, and to be alive and healthy because of it.
 
Redspout,
 
Just curious, how old are you?   If a so called friend doesn't know how or want to accept your medical situation, then believe me, you probably should just steer clear of them.   Finding out sooner, rather than later, makes you the lucky one.  Why invest your time making a friend that is superficial?  And any good relationship requires a time investment, whether friends or lovers.  Don't be dishearteded or discouraged.  There are really good people out there.
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


redspout
Regular Member


Date Joined Sep 2007
Total Posts : 27
   Posted 9/30/2007 10:12 AM (GMT -6)   
Thanks for the responses, much appreciated.

Well Peggy, I'm 38.
I'm thinking that you all are right about shallow people and how they react. They are probably doing me a favor by "backing off".
Don't get me wrong though, not everyone I've met is like that, but I have encountered a few, and it is somewhat disheartening. Especially when you like other aspects of the person, humor, intellect, etc.
But as you have mentioned, it's probably for the best, time and effort wise.

Thanks.
"The world hates change, yet it is the only thing that has brought progress."
-Charles Kettering


"He who rejects change is the architect of decay. The only human institution which rejects progress is the cemetery."
-Harold Wilson


xdeex
Regular Member


Date Joined Sep 2007
Total Posts : 42
   Posted 9/30/2007 10:42 AM (GMT -6)   
Hi Redsprout.

I am one of the lucky ones and never experienced negative reactions regarding my bag. If I do, well its their loss and people and their ignorance not really worth knowing.

My family still treat me the same as do my friends and co-workers and I talk about it openly if they want to know anything.

The only time I had a reaction was when I told an old friend that I had crohn's disease. She sort of moved away from me when I told her.........must have thought it was contagious or something.

Anyhoo there are people out there who do not care what is attached to your abdomen (my friend says she couldn't care if it was stuck to my head!!!!!!!!!!!!hahaha.)

Best wishes Diane xxx
Diagnosed Crohn's 1994, panproctocolectomy with ileo Feb 2006.


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/30/2007 2:47 PM (GMT -6)   
Redspout,

How do you tell people that you have a bag? I have found that humor makes everyone feel more comfortable. When I returned to work last week teaching my fitness classes everyone wanted to know why I was away from work for 6 weeks. So, I announced to the class that my surgeon had a GREAT idea for me...He wanted to but a hole in my tummy and pop my small intestines through the hole. Now, I am on a bag! My whole class looked amazed and asked me, "are you wearing a bag right now?" I said, "sure, I am the only one here who gets to poop while I ride...it cann't get better than that!" Everyone laughed and then I started the class. If anyone in my class decided not to come back because I wear a bag, that is their right and it would not bother me a bit.

For one, if a potential girl friend is going to treat you different, you probably should find out early in the relationship rather than later. You do not need to be with someone who is going to judge you for having a bag so take the "no call backs" as a blessing. Now maybe thses comments are easy for me to say because I am married and I am not in your situation; however, I would not care what people think even if I was single (this is just my personality). May I ask where you are going to meet girls to potentially date?

xdeex
Regular Member


Date Joined Sep 2007
Total Posts : 42
   Posted 9/30/2007 4:11 PM (GMT -6)   
oops many apologies Redspout!!!!!!!!!!!!! Mispelt your name....... eyes
Diagnosed Crohn's 1994, panproctocolectomy with ileo Feb 2006.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/30/2007 7:28 PM (GMT -6)   
i haven't had anyone treat me differetnly, but i havent' told anyone either, when i told my family, they were all supportive, my grandma was all upset though, not because i was gonna have it, because i was gonna have to have the surgery and she and her sisters kept telling me, oh you poor thing, you will have to live with that, and i finally said, it's not a big deal
THe only time anyone has seen it, (i told this story in another thread) is at work the other night, my shirt got caught on a tray, and my pants were too big and the top of the bag came out. I don't know if the people at the table saw it or not, they didnt' treat me any diffretnly after that, but they did leave me a big tip, and i am a really bad waitress, so i am thinking they were porbably saying, oh the poor girl, living like that, let's leave her money, lol
I think that they are all right, if someone can't deal with it, then they aren't worthy or being your friend

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 10/2/2007 7:57 AM (GMT -6)   
I don't tell people unless we become very close friends. Of course my family knows.

You're going to find some people have very strange ideas about ostomies. I even know people who have been ill for many years, have been incontinent for many years, have no life, can't work or travel, but still think having "a bag" would be the worst thing imaginable even though their doctor has recommended it. I don't tell these people either.
 
Some people think I should be "educating" these people about ostomies, but it's not my job.  I am on a list and am called to talk to new ostomates at the hospital to show them it's not the end of the world and that you can live a normal life, I enjoy that. 

But...I've had jobs where I worked for years and no one knew I had an ostomy.

You'll begin to realize who you can tell, and who are better off not knowing. As far as dating, I don't think a prospect has to know right away either unless you know they understand like a nurse or some kind of health care worker.

I've never been ridiculed, but I've also withheld the information from ignorant people.


Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 

Post Edited (JudyK89) : 10/2/2007 8:19:59 AM (GMT-6)


redspout
Regular Member


Date Joined Sep 2007
Total Posts : 27
   Posted 10/2/2007 6:49 PM (GMT -6)   
"How do you tell people that you have a bag? I have found that humor makes everyone feel more comfortable."

That depends on the situation I guess. If I've dated someone for a little while, I feel it's something that they should know early on, perhaps not the first date, but the third, that's usually the one I pick. As to how I tell them, I usually start by mentioning that I had this problem for quite awhile (UC). That not too long ago I had surgery to remove my colon, as it was getting too diseased. By this point I pause to see if they catch on that not having a colon means wearing a bag. If they don't make the connection, I go on to explain to them that probably for the rest of my life, I'll have to wear a bag, I also may throw in a joke or two. Depends on the other person's character. At this point, either they'll start asking questions about it, (which is a good sign in my experience), or they get quiet, and don't really want to talk about it anymore. More than likely, they're not going on anymore dates with me. Friends, well any new friends or acquaintances I keep on a need to know basis.

Before I got the bag, I had UC for a little over 16 years. When I was younger, I dreaded the thought of one day having to wear one. Out of ignorance I suppose, as I didn't really understand or educate myself too much on the subject. As I got older (and hopefully wiser), I began to realize, as my UC got worse, and 40 milligrams of prednisone a day were doing nothing for me, that the bag was imminent. So I educated myself, and learned more about it. Actually, that's where this forum can REALLY help out. I got to the point that when I was scheduled for surgery, it didn't bother me in the least, and it still doesn't. Like so many people have stated on here, their lives are more fulfilling and they can do and eat things they couldn't before. So I have no problem with a bag, it's others that have it. But I can understand the ignorance, or the misconception. The problem is that a few of them don't stick around to find out.
"The world hates change, yet it is the only thing that has brought progress."
-Charles Kettering


"He who rejects change is the architect of decay. The only human institution which rejects progress is the cemetery."
-Harold Wilson


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/2/2007 8:42 PM (GMT -6)   
i was like you redspout at first i would have sooner died than wear a bag, then when my son was born and i was missing out on his life, i looked into it, and talked to people here, and learned about them, i realzied it would be pretty good!
when i had the sugery i just told people that my intestines were so messed up that they opened me up and took the bad parts out. That's all i say.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/3/2007 7:24 PM (GMT -6)   
Redspout,

I am not sure I would want to know about someone's bag by the third date. Why do you tell the girl so soon? Maybe I am the one who is ignorant here but I do not think she would need to know for many, many months. The first few months of dating should be reserved for getting to know eachother - laughing together, spend time talking about each other's hobbies, career, and goals. This may be to personal, but are you telling a girl sooner b/c you plan to be intimate? Please undertand my ignorance here... I have been married for 13 years. I have not dated in a LONG time and when I did date, I did not want to be intimate with anyone until I was married. When my husband and I were dating, I fell in love with HIM. If after 6-9 months of dating, he would have told me he had a bag, I would not have cared at all. I think you need to give a girl some time to fall in love with you. Once she loves you, a bag should not matter to her at all.

I really hope you find someone. Is there a singles ostomy forum?

redspout
Regular Member


Date Joined Sep 2007
Total Posts : 27
   Posted 10/3/2007 8:45 PM (GMT -6)   
Hi Amey,

I tell the girl on or around the third date because I think that with a potential mate, somebody that could turn out to be the one for me, I prefer to be upfront early on. There are no surprises down the road. Putting a friend on a need to know basis is one thing, but that somebody who could be the one for me is something else. You mentioned about being intima, it's not because I'm hoping to get lucky early on, and I'm "preparing" her by cluing her in early. I guess it's more that if we finally get around to being intimate, even if it's after 6 or 9 months, she won't reject me before getting intimate. If she does have an issue with the bag, better to find out sooner and not waste those months on someone who can't accept the bag. The bag is something that ostomates are used to, but alot of the "bagless" ones don't really know much about it, and sometimes the unknown can be intimidating, or as in my case, a "turn-off" once in awhile. There may even be some kind of stigma attached to wearing the bag by others who are ignorant. Better I should weed those ones out early I guess, that's the message I'm getting here anyways.

It's just a bit disheartening when it happens. But it's something I'm going to have to get used to, until I find "the one".
"The world hates change, yet it is the only thing that has brought progress."
-Charles Kettering


"He who rejects change is the architect of decay. The only human institution which rejects progress is the cemetery."
-Harold Wilson


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/3/2007 8:50 PM (GMT -6)   
well when i was dating years ago, i have been married for 6 years and been with my husband for 8, the third date was usually when people began getting intimate, not me, but that's what all my friends said, and that's when i noticed that the guys i were dating starting expecting it.

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 10/3/2007 9:01 PM (GMT -6)   
Redspout,

You are amazing and I admire your strength. You have really opened my eyes. I never realized that people could be so judgmental especially over something so trival as a bag. I hope I never encounter someone who would look at me differently. However, if I ever do, I suppose I would feel like you ..better to weed those people out earlier.

You sound like a really neat individual....I am sure there is a Mrs. Redspout out there somewhere. :o)

redspout
Regular Member


Date Joined Sep 2007
Total Posts : 27
   Posted 10/3/2007 10:01 PM (GMT -6)   
I'm sure I'll bag her one day.
"The world hates change, yet it is the only thing that has brought progress."
-Charles Kettering


"He who rejects change is the architect of decay. The only human institution which rejects progress is the cemetery."
-Harold Wilson


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/4/2007 7:30 PM (GMT -6)   

Redspout  -

HA ...  HA ... HA ...  !!!!!!

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/4/2007 8:17 PM (GMT -6)   
wow redspout that was bad...lol

Stoma Girl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 10/8/2007 7:20 PM (GMT -6)   
:) Hey, I'm Mary, just joined this thing.

I had my Ileostomy four weeks ago (I'm 18) and so far I've got my confidence back by completely changing my appearence.. like I cut all my (long) hair off and dyed it a crazy colour, and got a facial piercing.. Not sure how that helped but it did.. probably because I thought people paid more attention to that than the rest of me, which made me feel better, like people weren't looking. But then I decided not to try and hide it, and to tell everyone I know about my stoma, so I did and it made it easier. It gets it all upfront so you don't have to worry that if you leave it too long someone might change the way they feel about you.

So two ideas there, really. Then again, I'm a very changeble person.

And at the end of the day, it's your personality and who you are that's important, not a bag attached to your stomach.

(Wow, I sound so much more confidant than I am! :P)

Peace Out :)
Never Give Up, Never Surrender
 
.. Stoma Girl ..
.. Ileostomy following Crohn's Disease, 2007, aged 18 ..
.. Time between diagnosis and operation - one year ..
.. Journal of stoma-affected life : <a href="http://stomagirl.livejournal.com">Here ..</a>


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/8/2007 8:53 PM (GMT -6)   
Hey Mary,
Welcome to Healing Well. I'm glad you found us. Wow, you've had a lot happen in the last year. I admire you for being so strong. I had Crohn's for 7 years before my surgery, and it was miserable. I was sooo sick, and I wish I would've had this surgery much sooner.
 
I'd love to see your new haircut and color! You should post your photo on our photobucket.com page. The login is crohnsdisease and the password is 6mp3asa.
 
Take care,
Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Stoma Girl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 10/9/2007 5:24 AM (GMT -6)   
:) Have done!
Woke up this morning bag-leak free for the first time in five days! Awright!! XD

Sorry, ecstatic :P
Never Give Up, Never Surrender
 
.. Stoma Girl ..
.. Ileostomy following Crohn's Disease, 2007, aged 18 ..
.. Time between diagnosis and operation - one year ..
.. Journal of stoma-affected life : http://stomagirl.livejournal.com ..

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