Do you feel embarrassed about Crohn's?

[partlycloudy]

I never have and was surprised to discover there's a stigma attached to it. I don't go around shouting it to the world, but if someone asks or I need to explain why I'm eating a certain way or whatever I unhesitatingly say I have CD.

Honestly, up until I personally experienced CD I had no opinion about it one way or another, and I certainly had no idea there were so many poo problems like accidents and odor involved. I assume most people are like I was in that they just know it's a digestive thing but know nothing else about it.

Maybe I'm wrong though.

 

[Rebecca85]

If people ask me about it, I don't mind telling them. But I don't go around shouting it from the rooftops! Some people I work with think it's just IBS, or the runs, even though I have tried to explain.

 

[Mountaingem]

You just have to take into account people's maturity level, IMO. Some people can't handle the details of Crohn's, so I start off with a few details and if they ask for more info then I'll share them.

It's such a double standard, at least here in the U.S.-people can joke about diarrhea, vomitting or gross-out sexual stuff but if you talk about in medical terms it suddenly becomes offensive-ridiculous!

 

[Mark63]

I'm never embarrassed to discuss my Crohn's. If people ask I explain what the disease is and how it effects me. Sometimes they are really interested, sometimes they get embarrassed.

Mark

 

[Grumbletum]

I must admit that I only had a vague idea about Crohn's until I moved here. I do a conversational Gaelic class and we meet at a friend's house. One of the guys told us he has Crohn's to explain why he would only drink hot water and couldn't have cake etc. But he didn't go into detail and it's only since joining the forum that I've learned what all the other possible symptoms are.
I'm really ashamed now when I think back to my childhood and sniggering at the pretty horrible jokes that went round i.e. about Cliff Richard and his colostomy bag.
I'm in the process of tests for suspected Crohn's. Have only told close friends and family until now as it's not definite yet and quite a few of them were worrying that my pain and weight loss might be due to cancer.

 

[Crohns08]

It depends on the person really. If I think someone can handle it I'll tell them. If I think they're too immature I get really vague and then I tell them if they really want to know more then they can google it when they get home.

 

[Astra]

ha ha Grumbletum!
I did the round of jokes too as a kid.

This is a funny blog

http://numbertwos.blogspot.com/2009/05/fame.html

I don't feel embarrassed anymore, what I'm trying to do is raise awareness, I have a purple ribbon necklace on the way, and when peeps ask what it stands for, I'm gonna bore them to death.
Purple ribbon also stands for Alzheimer's of which my Mum died of. Double wammy!

 

[e13 boy]

I'm never embarrassed to discuss my Crohn's. If people ask I explain what the disease is and how it effects me. Sometimes they are really interested, sometimes they get embarrassed.

Mark

Agree with Mark on this subject - i have found that 99% of people have no understanding what CD is.If i go through all the symptoms people are very suprised that a bowel disorder can give a person so many different symptoms.
If i start talking about the immune system etc they start to look a bit lost.
I've always said only a chronie understands a crohnie.
When i was told what i had 13 years ago i'd never heard of it,neither had my family - i wish i had known then what i now understand!

 

[Grumbletum]

Great link Astra. And I wasn't aware of the purple ribbon and it's significance. Must look into getting one. My Mum has Alzheimer's too and is going downhill rapidly Another completely devastating disease.

 

[Deleted member 81255]

I am not embarassed. I tell anyone that will listen. It's something that is a part of me and it's not going to change. Why hide it? Let's all scream it from the rooftops! We are IBD women/men and we are proud of it! :hug:

 

[rygon]

I cant imagine any of us being able to be embarrassed. Its hard enough to live with as it is, I think i'd crack up if I didnt laugh about it all

 

[ameslouise]

I'm always surprised at the number of people who have never heard of Crohns and/or don't know what it is. I have known about it forever and have known several people with it, was engaged to a guy with it a long time ago (thank god we didn't end up getting married - that would have been a disaster to begin with and I don't think he could have coped with ME having CD, too!)

Never embarrassed and people I tell never seem embarrased or grossed out either, just curious and sympathetic.

- Amy

 

[SwtNdSpcy]

Yes and no. I am not embarrassed that I have it. I don't mind telling people I have it, and find it necessary most of the time when they don't understand why I am unable to do a lot of things lately.
I do get embarrassed about my fecal incontinence, vomiting in public, and lightheaded episodes, though.

 

[clearwell]

I find people telling me all about their bowel habits and comparing them to me.They don't know the half of it.I don't go into details only with my close family who understand more about it now.My mum went to the loo yesterday and then phoned me (I am a four hour car trip away from her)to tell me she stunk worse than me.Now I am not entirely sure if that is supposed to make me feel better,what do you guys think.She is 80 so I make allowances.It did give me a bit of a laugh.

 

[maxibear]

well, i felt odd when i had to go in the car after a slice of pizza before i knew i had crohns, but thaats about it

 

[DanaDeadPetals]

I don't get embarrassed about having CD at all. I love when people ask about it because I feel like the more we can educate others the more understanding they become. It seems like nowadays most people have heard of it or know or have known someone who has. Like a lot of you, when I was diagnosed years ago I had never even heard of it. We sure have came a long way!!

 

[Becky]

For me, getting the diagnosis actually helped take away being embarrassed. I actually had an excuss as to why I had to use the bathroom ALL THE TIME!

 

[ThanksP]

I'm not embarassed at all but I certainly don't tell the world. Mainly I don't bother because people either don't understand or think that it's IBS. But I was glad when I was diagnosed because it gave me an explanation for why I was so thin. I could not stand people always commenting on my weight and telling me I needed to put "meat on my bones". As if I didn't know that I was thin...DUH! After diagnosis, I was able to tell them I had a medical reason for being underweight and then they would shut their yaps.

 

[AndiGirl]

I still find Crohn's Disease embarrassing. Depending on who is asking is how in depth I'll explain the disease. If they are a friend or somebody that I feel comfortable with, I'll explain it. If it's somebody that I barely know or am not comfortable with, I'll just say, "It's a digestive disorder that causes inflammation in the digestive tract."

 

[moogie]

No I'm not embarrassed. However I did try and keep it secret from most people for so long. For exemple my extended family on my gf side they are all manual people working the build houses and things like that. So when I came into the family at first they did not understand why I was always tired and unable to follow them. They thought I was lazy. Now they all know but I still don't think they really understand what this plague entails.

Most people that do ask seem intersted but frankly until you actually live with uit you have no idea. No matter how you explain it.

Oh well... not embarrased just pissed as hell..

 

[bruscar]

EH NO WAY !!

Had to explain to the cable guy as to why i wanted a flatscreen in my en-suite though !! . . . Ha Ha !!

Bruscar

 

[spcwife23]

im not embarrass to tell anyone if they ask, im very happy just to be able to say that theres a reason im acting or feeling the way i do.. but what i hate is when you explain things to someone and it seems like they are to dumb to understand what your saying.. i have a friend and he thinks that me being tired or feeling the way i do is because i need to excersise, i seriously went off on him and hanged up the phone.. people think its easy and we want to feel the way we do.. sigh sorry i just got fustrated thinking about it

 

[Jennifer]

and I certainly had no idea there were so many poo problems like accidents and odor involved.

Poo problems come with the package of having sores in your bowels. That's how I describe it anyway, a disorder where my immune system attacks itself to the point where sores and other nasty things can form. I don't delve into the side effects of sores. Where did this "odor" symptoms come from? That's a new one. What's the odor from? We don't secrete some sort of smelly goo. :/

 

[partlycloudy]

I wonder if this "stigma" I've read about it is really what others think rather than ourselves. Again though, I thought nothing of CD before I got it because I didn't know anything about it.

Maybe the stigma is just rumor.

Where did this "odor" symptoms come from? That's a new one. What's the odor from? We don't secrete some sort of smelly goo. :/

Well, actually I do secrete a pretty smelly goo, somewhat explosively on occasion. Hehe.

 

[MapleLeafGirl]

Oddly enough, I was more embarrassed by my symptoms before I was diagnosed. After that, I was not the least bit embarrassed because there was a cause. I sometimes forget that "normal" people don't like to discuss their poop the way I do and will see an odd look on someone's face before I realize I've over-shared

 

[Chelle78]

Welllll.....I'm still quite embarraced over it. It is not my fault. There is nothing I can do about it. But like many people have said...I really can't explain it to people. If I'm not actually crying in obvious pain, or obviously sedated because I am on schedule for taking ALL my meds today, then I look lazy. Because unless you actually have it-- you just don't get it. The exhaustion, weakness from weightloss, inability to exercise, "leave me alone so I can take my coctail of meds or eat my meal" has turned into the appearance of selfishness and/or laziness.

When I do try to educate my family about it (my truly loving and caring and wonderful family) they are to the point of zoning out and ignoring the whole conversation and don't remember anything I told them. I stop talking about how I'm feeling and they thing all is well again. I am a chronic patient. I would love to see some remission of the disease or side effects of the drugs. Friends I have told don't ask how I am doing..they just wait for me to blow from stress. I would be happy to try to deal with it now. People around me are just not ready.

Very embarrassed!

 

[Cordillia16]

Good question. Gives you something to think about. I am not embarrassed about telling people, but I'm sometimes embarrassed about the symptoms. I think it would be way worse if I was younger, but now that I'm older I'm just happy to know what is going on with my body and why these things are happening. Also, my symptoms are not that extreme as compared to some I've read about, even on this forum. My heart goes out to those people.
Most embarrassing process right now is the grumbling I get in my stomach during a really quite class at school. So loud!! Everyone looks. I just smile and pretend I don't know what's going on.

 

[lostpanda]

I’ve had CD sense 98. I did have a level of awkwardness about it. It took so much mental and physical energy to deal with the symptoms of Crohns, there was never much left to be embarrassed with. If someone asks, Ill gladly talk about it. I have been blessed with remission sense my large bowel was removed in 06. After returning home from the hospital, the first time I saw myself naked in a full length mirror, my heart sunk. Seeing that plastic device attached to my body, something that had no feeling when I touched it was the worst. After about six months and no more Crohns symptom, I accepted my new porta potty, that’s what I call it. Humor definitely makes dealing with such things more palatable. After reading some medical journals, I discovered that a much larger percentage of females vs. males own the disease and it usually hits them about the same time they are attending college. When I read that, most if not all of my embarrassment faded away. One bit of information some may or may not know; a fond user of my spell check, my version of Word don't have a clue how to spell Crohns. Well that’s my story and I am sticking to it.