Crohn's; not so common.

[farm]

I have had Crohn's for 15 years now. What I find kind of odd is that I have only met 2 other people who have it. I am so glad times have changed and now we have the power of the internet to find others like myself.
Crohn's is such an embarrassing disease that many people who have it do not want to talk about it.
First of all it is hard to explain exactly what it is and then when you explain camping out in the bathroom and things of that nature you can see people's face turn.
Now I'm the kind of person who will tell anyone who asks and I'll tell them more than they want to know. But I can surely see how people would want to keep all this info to themselves and I also see why people wait so long to seek out treatment and diagnosis of this disease.
To those suffering in silence I would say to you, stand up and be heard and KNOW you are not alone.

 

[D Bergy]

I tell people that ask also. I do not go into any more details than they ask about.
I know one other person with Crohn's. She is on Imuran and is quite happy with it since it is working for her. She has had two resections in the past.

Other than that, I don't know anyone else that has it.

It is nice to have this forum to discuss it with people who have first hand experience with the strange and annoying symptoms.

Have you been treated all along, or did you go for a while with no treatment? I had no idea I had it, although in retrospect, I have had occasional symptoms since childhood.

Dan

 

[AmandaC]

When I was first diagnosed and I told people I had CD they would always say to me that they knew someone else with CD as well. I couldn't believe it because I'd never heard of it before. I don't have any close friends or relatives with CD, only a guy at work who told me he had it but has never had a flare since being diagnosed years ago (lucky bugger).

I'm not really embarrassed to talk about it because it's just a part of who I am. I don't think I could do this on my own so I rely on my family and friends to help me through it.

This forum has definitely helped me also because unless you have the disease you can't really understand what someone is going through.

 

[chelli]

I agree that is not a common disease. Before me, I knew one person who had it.

Here's my delimma, I have it in my stomach. It's really difficult to get information about that.

Chelli

 

[danman]

By the way, your both very welcome Farm and chelli.

I've had this for 20 years, and in that time, I've only met 1 other person with it.
That was only last year. My sisters husbands brother in law (My sister only got married last year, he was at the wedding)

Then , when I was in hospital before Christmas, I met 2 more people. But I can't sat I know them or am still in contact with them.
Also, they used me for information, they were only just diagnosed.

 

[farm]

I tell people that ask also. I do not go into any more details than they ask about.
I know one other person with Crohn's. She is on Imuran and is quite happy with it since it is working for her. She has had two resections in the past.

Other than that, I don't know anyone else that has it.

It is nice to have this forum to discuss it with people who have first hand experience with the strange and annoying symptoms.

Have you been treated all along, or did you go for a while with no treatment? I had no idea I had it, although in retrospect, I have had occasional symptoms since childhood.

Dan

I have been diagnosed for 15 years, but like you had symptoms since childhood. I was in the hosptial at age 5 for stomach pains but they gave no diagnosis then. I was 18 when they finally told me I had CD.

 

[misscris]

I'm still new to the disease and diagnosis too .. but in the few times I've mentioned it to people they have all said they know someone who has it. But I have never met anyone else who has at this point. Maybe nobody wants to talk about it and admit that they have it. I'm not all that shy, so I don't mind mentioning it...but a lot of people aren't comfortable sharing something like this with others.

 

[SpoonNinja]

ive only been dxed for a lil over a year and i tell ppl i have crohns and when they ask what that is i just say its an intestinle disease unless they ask more, if they do ill tell them, to some extent ne ways...but ive never met anyone else with it, ever, i really want to tho so i can have someone to talk with it about, its nice to have so many on here to talk with but i would still like someone in rl so that we could hang out and not have to worry about running to the bathroom and having to explain why.

 

[bradraz]

yah i tell people when they ask, it does get annoying that NOBODY knows what it is lol, but i didnt even know what it was until i got it. There is a another kid in my grade that has the disease but my guidance counsler wont tell me who it is>.< lol

 

[SpoonNinja]

thats weired they wont tell you, the kid mustve said not to tell ne one. i didnt know what it was untill i got it eaither but its not so bad, there are a lot worse diseases you can get so im just glad it wasnt something more terrible!

 

[bradraz]

yah i agree with you, thats what i always say

 

[Momof2boys]

i dont know anyone else who had it either or really what it was. i am still learning everday i dont have it as bad as what i have read on here and other sites, so in that i am lucky and blessed. i dont know what i would do without all the wonderful people and my family.

 

[D Bergy]

The HIPAA laws in the U.S. protect private health information. This is why the counseler will not disclose who has the disease. They could get in trouble, in theory, for doing this.

Some of this was spurred by HIV and AIDS, but health information is considered protected information under law, although in reality, this law is violated all of the time.

 

[SpoonNinja]

wow i didnt no that, i mean i knew drs couldnt say stuff cuz dr patient confadentiality yea my spelling sux, but i didnt no it applied in school, it seems like they would want to tell you something like that so they could talk and make friends with eachother, you know or help with the disease, but oh well, ha i would go and post a thing on the schools message board saying "ive got crohns do you wanna be friends" lmao that would be great^.-

 

[misscris]

Hey Brad, if you want to know who it is in your school. .... tell the guidance counselor you are interesting in befriending this person, and ask that they pass on your name to the other person and take it from there.

 

[prettykitty]

The school likely is not covered by HIPAA, but it is definitely covered by FERPA, which protects student records.

 

[prettykitty]

Strangely, I actually know 3 other people who have Crohns -- two of whom I knew had it before I was ever diagnosed.

I looked up the prevalence of CD in North America -- on the high end it was around 200 per 100,000 (or 1 in 500) in 2007. So I guess it's not unusual to not know anyone else, or to only know 1 other person.

Guess I'm just a statistical anomaly! (or maybe there's some weird risk factor I have in common with people in my peer group...)

 

[ChrisJue]

Hi all I've had CD for 32yrs and only know one other person with CD my sister so I guess its either not that common or people just don't talk about it. I only tell people once I've got to know them. I worked at one firm and never told anyone for 5yrs and they were all surprised It goes to show that people don't realise.
Chris

 

[JillianB82]

Oddly enough we were just talking about this at school (my work) the other day. Most of the staff knows of my situation, but a new girl started & we were taking our lunch together the other day & one of the other girls asked how I had been feeling, so I was going over some of my symptoms & the new girl asked what I had, so I told her.

I guess the reason I do not like to tell everyone that I come across is because I do not like that face I get. You know that "Oh, sucks to be you face!"

If someone asks me, I have no problem sharing, but a lot of times I do not offer information.

 

[Nytefyre]

The only other person I know with Crohn's is my sister. My wife has IBS. I have lost a lot of my hesitancy about bathroom humor or topics. I am completely open, lol! Sometimes it's a riot. Sometimes I gross people out.

If someone asks, then I will talk and talk and talk and talk. But I don't broadcast the info just for attention.

I am gearing up to get a tatt on my belly of an angry toilet with the words Crohnie for life around it!!! Of course, it will be ruined with my next surgery, assuming I will have to have another one!