Community Forum

i'm turning 16 in september and starting my junior year in high school a week after that. i was diagnosed in late april and have been dealing with crohns ever since. 

when i told all my close friends and family about my diagnosis, some reacted better than others. some were loving, helpful, considerate, and respectful. then there's that small handful where if you try to talk to them about it, they're total *** .

i know crohns is one of those diseases where you can only understand if you live it, but is there even the slightest chance someone without the disease will ever understand? it's depressing whenever i think that the only people i can go to to vent to are "my kind." 

 Reply posted for nadimey.

I am currently going to be a junior this year in high school, and after having Crohns for 4 years,  I can tell you that the kids at school won't always understand. I remember trying to tell my friends after being first diagnosed and no one seeming to understand me or even care. 
In high school, one of my friends has diabetes, the other a cleft palette and 10 surgeries, and the other had heart/artery surgery. And even though we all talk about hospitals, and anesthetics, and appointments, I have yet to tell them about the more embarrassing parts of IBD.  Worrying about bathrooms,the pooping, the symptoms,  and food, and flares, and all that stuff. 

So sometimes, people might not fully understand, but they try and thats okay.  Besides, you have to remember that your IBD means nothing in a friendship.  

 Reply posted for nadimey.

I did not intend for my previous post to end up here.  I just joined and was just sending a message.  Did not know it would end up on this particular subject.

Sorry.  Hang in there Nadimey....it will all turn out just fine.  I remember what it was like always looking for the nearest bathroom.  I was really sick in high school too.  But made it through as will you.  

 Reply posted for nadimey.

I am a 73 year old woman.  I have had an ileostomy since 1970.  It's become part of who I am and I really don't give it much thought.  It has not kept me from doing most things.  The worst part is getting clothes that are comfortable, especially jeans.  Thought maybe I could be of some help to some newbies out there.  You can lead a normal life with this.  I have been married for 51 years.  Have 2 sons and 3 grandchildren.  My sons are aware of my situation, but it is never talked about.  LOL  The grandkids are not aware.  My 13 year old grandson saw that quit smoking commercial where the woman has a colostomy and it just freaked him out.  I never have really told anyone just for the sake of telling them.  There are people I have known for 30 years or more that do not know.  It's funny if they do find out as they are shocked.  Of course with older friends it does not turn them off, but it's hard for younger people to understand unless you are that younger person.  Anyway, if I can be of help to anyone please let me know.

Diane

 Reply posted for nadimey.

Hi Nadimey,
 
We have some answers about how to talk with your friends in “A Guide for Teens with IBD”.  Check it  out at: http://www.ccfa.org/assets/pdfs/teenguide.pdf
 

 Reply posted for jkasse.

Thanks jkasse!!!!

 Reply posted for nadimey.

Hi Nadimy!  To put it bluntly ..Some people are just jerks :0/  High school is hard and kids your age are still trying to figure out who they are.  Try not to take it personally.  SEEK OUT the positive influences and SHUT OUT the negative ones. My son is a freshman in high school and that's the exact advice I give him. Find one or two good friends and tell them as much - or as little - as you want/feel comfortable.  Some people just don't understand so encourage them to ask questions.  I've had Crohn's longer than you've been alive (17+ years) and I want my friends and family to understand so I tell them ... "If you're comfortable enough to ASK the questions than I'm thrilled to ANSWER them."  Sometimes friends just need to know it's ok to ask  :)   There's no question that I'm not willing to answer .. And I do it with humor .. Why yes .. I do poop 20 times a day! Don't take yourself too seriously and you'll see - people will follow suit!

Good luck!! Hope things start looking up for you!

~ Janie