Teens not talking about Crohns

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Hope345

Hope345

Joined
Oct 16, 2012
Messages
930
My daughter was diagnosed with Crohns 1 year ago. she is finally symptom free at this time. She is 14, and has done everything she has needed to do, which was a lot!!

I have noticed some teens will talk with others and want to find out more about their disease. B does not want to talk or learn more about the disease. I have always thought she will talk when she is ready but I was just wondering if some of your teens are like B: "If I dont talk about it, it will go away?"
 
Last edited:
Jaedyn wants to talk to other teens who have it, but not really with nonCrohnies. She has talked a little bit about it to her best friend. We don't talk about it much. I guess I'm so freaked out about it, that I don't know how to talk about it much. We've told her her diagnosis and explained the treatment options. We include her in our treatment discussions, because otherwise it is a battle. When she sees her options she is much more reasonable... that is also how I finally got her to agree to see the GI... a discussion about my concerns about her growth and wanting her to get colonoscopy to see if we can see if anything is wrong. She got so tired of being sick that she said she'd do anything to figure it out and get better. Anyway, I am diverging from your topic, sorry.
 
My daughters the same... very rarely she might ask me a question but most of the time she doesn't want to talk or be reminded that she has this disease.

At the IBD clinic they suggested she speak to the social worker but when she came in the room my daughter told her i'm fine i don't want to talk about anything.

When she was first diagnosed i suggested she didn't tell her friends as i thought kids can be cruel. But a few months ago i left the decision up to her and she still hasn't told anyone. Also her teachers don't know.

Hopefully they'll talk when they're ready
 
Well I'm not a teen anymore but I don't like talking about it with my friends and actually very few people bar my family know I have Crohn's, I was only diagnosed in September last year so I sorta still am having a hard time telling people, I rather just decline on certain things because I've been "sick"
 
DS is only 9 so not a teen yet but he doesn't want his friends to know except his bf.
The school does know .
He will talk about it with us and his doctor freely.
We are starting to slowly work on transition of care so at 18 he can take over in the driving seat.
I think that is more critical than letting his friends know.
The Gi and Rheumo talk directly to him about symptoms med compliance why he is doing the drugs etc... I just confirm.
He does have one friend with crohn's so that helps as well.
 
My son was 16 when he was diagnosed a year and a half ago. He seemed to be ok with his friends knowing that he got a diagnosis of Crohns - ...and he had an ng tube for EEN at the time so it was obvious that there was something going on... I think it helped him to have a name to tell his friends that justified why he wasn't up for all of the social stuff.
He has not, however, had any interest at all in meeting or talking to others with the diagnosis so I haven't pushed it. Likely as an 'invincible' teen, he doesn't want to dwell on the complications and chronic nature of this - he just wants to plow on with life and 'feel normal' like everyone else. It may take a while before he identifies with others with Crohns and accepts that he is one of them??
 
Devynn is 11 and won't talk about it unless she has to (with drs etc) I think she thinks if she doesn't talk about it and validate it, it will go away. I've told her it won't.
 
Stephen was 16 when diagnosed and, from the very day he was diagnosed, he has told his friends, new and old, (including girlfriends, teachers, coaches and hockey teammates) about it. He's told them about his diagnosis, tests, treatments, etc. He's even shown friends how he inserts his NG tube because they were curious.

At first, I was a bit worried if his openness was such a great idea, if he would feel any negativity from anyone. But, actually the opposite has been true. Everyone has been very supportive and, I believe, because Stephen is so comfortable speaking about it, no one has been uncomfortable asking him about anything and are happy to make accommodations if necessary.

We also talk about it often at home - what I've learned, what his options are, etc. But, I do gauge his interest when we're talking and cut it short if he doesn't seem to want to talk about it then.

He hasn't expressed an interest in reaching out to others with crohns... I think he probably is exactly as S mom described - an invincible teen who's interested in the here and now...
 
My 16 year old was diagnosed when she was 9 with UC. She still doesn't want to talk to anyone about it. She is better now than she was. And she has talked to a limited few of her friends.

One thing that has helped her is CAMP OASIS. I don't know if they have one where you are, some states have them others don't. My daughter goes to one in PA. Camp Oasis is a camp just for kids with Crohns and colitis. Every child there has one or the other. Most camp counselors have one or the other. And it is staffed by GI Dr's and nurses. It is one week during the summer and my daughter loves it. She can talk freely to kids her age who understand. They support each other, and the older campers take the young ones under their wing, they play games, have dances, lots of outdoors fun, swimming etc. This camp has been a godsend to us. Last summer was my daughters last year as a camper, she will return this summer as a LIT (leader in training) she then plans to go back as a camp counselor.

Ask your GI Dr if they know of one near you. If not go to the Crohns and colitis foundation's web site, look for the link for Camp Oasis and see where the closest one is to you. It really is worth it.

Good luck with your daughter and feel free to message me on here anytime, I know exactly what it's like to have a child with an IBD who doesn't want to talk.
 
My daughter was diagnosed at age 11. Usually she does not mind talking about her crohns with friends and acquaintances. But she doesn't like talking to the doctors and nurses that is when she gets shy. I encourage her to be open about it especially when we are doing an activity and she may need to rest or take a break then people will know why and be supportive. We have found people to be very supportive and wanting to help.
 
thanks so much everyone.
It is a healing process to talk with others.....so the ones reaching out will find great comfort.
She will talk when she is ready just as some of your children will.

Thanks Carol, any comments are welcome. I find I ended up talking with every single person I met. I guess that was my way of dealing with it.

Upset mom: b has always said Im fine to everyone but me. You are right, when they need to, is when they will talk.

Josh, you are so great to find this site. You are finding the support and info you need, without having to tell everyone else before you are ready to. thanks for your input too.

DS's mom: that is such a good idea to start getting them ready. I have been thinking of that too. It is so important, to have them take it all seriously enough to take over all the necessary meds and diet. Our GI said, once her patients turn 17,18 they want to stop all meds.

S Mom, I see that in B too. She just wants to live a normal life again. :)

Samantha: That is why i try to learn so much about Crohns too, so when she is ready to face it, I can answer her questions. Not easy.

Tess: Thanks for sharing about Stephen. I wish him the very best. Maybe we will meet him on this site someday when he is ready.

Doodleheads MOm: Love the name, by the way :). I have heard of camp Oasis. I dont think she would go... but I have heard so many wonderful things about it. what a great opportunity for so many kids.

Kim: I think young kids just dont want to appear any different than the rest of the kids. As moms, we just want them to know that there really are so many people who care and support them.
 
Last edited:
I consulted my now 17 yo son Badger who was diagnosed at age 10, about how to respond to this series of posts. These are his comments:

1. Especially when he was not in remission he didn't want to talk about Crohn's because it was such a big part of his life that he wasn't going to talk about it if he didn't have to.

2. He says every kid should go to Camp Oasis even if they think they don't want to go. It will change their life.

3. He hasn't told his current friends at High School because he's in remission, it doesn't affect his life except that he has to do blood draws and take medicine so it just doesn't come up. They have better things to talk about. He doesn't know what he would do if he got really sick again but, since he doesn't get diarrhea, it's not real obvious so he probably wouldn't say much because he'd rather be thinking about anything but having Crohns.

4. He said "No Way!" and guffawed when we read the one about the social worker. That's when he said every kid should go to Camp Oasis.

5.Regarding moms being concerned because their kids won't talk and moms who think their children avoid talking about it because then it will "go away" Badger asked me to share this direct quote: "Moms over think things. They shouldn't worry so much and just leave the kid alone."

6.He says that anyone who doesn't want to know about their disease is kinda stupid.

7. He says he did feel alone but it was a lot better after he went to camp. (Now he games online with kids he met at camp and I hear him talk to them sometimes about lab draws or appointments.)

So ladies, there you have one young man's opinions and experiences.

I absolutely agree that our kids need to go to camp if at all possible.

I am probably (OK definitely) guilty of over thinking things.

I think his point that you just want to talk about other things is well made.

He says he doesn't know anyone that thought their disease would go away if they didn't talk about it but he guesses that some people might do that. He says those people really need to go to camp because the disease is not going to go away.
 
All sarah's good friends know she has crohn's

It not she thinks her disease go way if she doesn't talk about it. It more that for most part she is symptom free and doesnot want to be reminded she has crohn's.
 
Last edited:
Patricia, your son Badger has a way of getting right to the point and it is greatly appreciated: sometimes us moms need to be reminded to back off just a little. :)
I wish him the best and he sounds like a great guy.

Catherine, I dont blame her a bit. It is nice to get a break from it. :)
 
I am 19 and only tell close friends, or other people if it is necessary. I hate when people I don't know very well say "And how are YOU doing" with this pitying look on their face - I'm sure they mean well but for some reason it really bothers me. Most people I've told didn't really know much about it but were very supportive.
 
Jack doesn't have a problem telling people but is very matter of fact about it. One example is at baseball games where sunflower seeds are passed around the dug out. "No thank you, I have crohns and sunflower seeds could make me very sick" end of story a few will ask what that is and he explains very simply. My immune system attacks my guts sometimes and I get sick.
Patricia56, Jack would totally agree with Badger. Camp Oasis is the best! Same thing, those are the people he will talk to about medicine, tests, etc and they keep in contact through, xbox, skype, facebook, texting. Just got his application for this year all filled out.
 
Kiik, B hates when people are always asking her how she is doing too. Now that she is feeling better, I am not sure myself, how to adjust. we are joining a gym and I'm a little tougher on her now about helping out around the house more... like I would if she didnt have Crohns. I am trying to just be normal and not baby her so much.

Jacqui: Go Jack, appreciate the straight forward approach. Best at camp Oasis. It sounds like it is a lot of fun for all. I heard that a man who also had IBD donated a lot of money to make this camp available for kids, after he passed away. Very thoughtful.
 
Last edited:
Whenever possible - which is pretty much all the time - I think we should treat our IBDers as if they were not IBDers.

I try not to lower my expectations or make exceptions unless he is in bed too sick to get out of it. Just like I do for my non-IBDer.

They have to live with this disease their whole lives. There is a place for pampering yourself when you are sick. But I think that we are not doing our kids a favor when we treat them as if having Crohn's is a reason to get out of doing chores or going to school or living life like everyone else.

If what we want for them is a full, active and "normal" life then I think we have to behave as if that is what they have right now and what they can expect in the future.

I understand this is hard when they are really sick. At those times we have scaled back the chores (take out one trash can's worth of garbage today or unload the top rack of the dishwasher). But the chores did not go away unless he was too sick to get up.

Our rules about school: Unless you have a fever, pretty bad diarrhea (remember my kid doesn't get this from his CD), are throwing up or showing signs of illness bad enough I am taking you to the doctor that day - you go to school. Obviously if he's just started antibiotics for a strep infection he stays home, or if his doctor orders him to stay home. Otherwise he goes to school.
 
I personally never talk about my Crohns, I for sure though learn a lot about it online by myself but I have never talked about it outside of my family.
 
Patricia, I understand what you are saying. I am a softy, but I can get tough when needed. Hopefully we will find the right balance for each child. :)

Ethan.. do you think you will ever feel comfortable sharing that you have IBD? My daughter has told a few people, but gets irritated with them if they want to know too much. She wants to keep it light and funny.
 
I'm sure i'd feel fine talking about it. I might move in with some friends in the future and I'm sure i'd need to tell them then. Right now, theres really no reason to tell anyone or talk about it.
 
I think crohn's is like any other chronic illness .
Both my kids have asthma but they don't discuss it with their friends on a daily basis.
If they see them taking meds prior to excerise then a brief explanation is provided.
End of discussion.

My Ibd kid has alot more than Ibd going on so while it may seem cruel this is his reality
He is young enough he will never know what it feels like to " be just like everyone else"
So similar to Patricia we have a rule you go to school you go to swimming etc unless there is a fever, chronic vomiting ( he vomits when flaring so once doesn't count :) )
Lots of diarrhea ( again constipated kiddo when flaring)
School is his job for now - learning how to navigate when things are not ideal takes practice.
 
Alec (13 yrs old) has told his close friends and teammates but doesn't want everyone to know ... he just says he wants to be treated the same as everyone else. He is afraid if everyone knows he might be excluded from social or athletic activities. So far his friends, coaches and teachers have respected and supported him. I think he is getting more comfortable about talking about it over time. I don't think he has completely come to grips with this being a lifelong illness. I thinks it is a process of adjustment.
 
I asked C what his take on all of this was, he agreed with Patricia's son that Moms over think things. When he's at school, if it comes up he talks about it if it doesn't come up then no biggie.

When he is doing well it is hard to get details about how exactly he feels or discussion about CD but when he is flaring it is play by play. He says he has this for life so it's not like he doesn't think about it but if he is feeling good there is no reason to let it control his thoughts and activities.

He has a friend that is a girl and she had an EN tube most of last year, they are still trying to figure out what is wrong with her. He talked more about how he hoped she got a diagnosis and how awful he felt for her having to deal with something and not having a name for it than he ever did his CD. I asked him why and he said his had a name, and a treatment protocol and statistics on every possible angle so he could wrap his brain around it all but she doesn't know...what it is, what will make her improve or the statistics so he feels bad that she has nothing to wrap her brain around.
 
Alec's mom: I think it is an adjustment for sure. Middle school might be the worst, even without IBD. These kids have a lot on their plates, and whatever makes them feel comfortable is the best. Wishing the best for Alec.

Clash's Mom: Clash sounds like a very caring young man. Even though he has a name to his illness, he can certainly relate to what this girl is going through more than most. Hope he continues to do so well.
 
Since before his diagnosis Ev has been very open with his symptoms, tests and the discovery process. He is working on a very basic website to tell his story and has actually had t-shirts made up that he's been giving friends :) For him it is probably easier because he's previously dealt with other health/injury issues that helped him to learn that talking stops whispers and rumors.
 
Twosons: That is great! Let us know when his website is ready and we can follow it too. I'd love to see pictures of his t-shirt, can you post one? I will mention that to Baylee, that sometimes talking about it, can answer questions for others around you so they dont wonder what is going on. Plus the more support you get, the better :) thanks for your comments and best to Ev.
 
Julie,
I'll try to get photos up. We aren't very tech orientated as a family so his site is pretty limited. I think it helps him to take what control that he can of his disease so that he feels stronger.

When he was 10 yrs old he was in a wheelchair with an external fixature on his leg. Four rods, titanium cage and just a very big "look at this kid" type of thing on his leg. People would stare, whisper and point. We actually had a lady pull her son to Ev's chair and tell him "this is what happens to bad boys who don't listen to their mom and keep running off in the store". I was so angry that I nearly went off on her. It was only Ev talking first that stopped me. He told her that was wrong for her to tell her son that and then he told them about how he had been injured in a soccer game. That injury really helped him to prepare for quite a bit in life I see now. It was such an ordeal but he made it back :) and feels much stronger because of it.
 
Twosons,

Thank-you for sharing your sons story. He is truly inspiring (agree with Jmrogers4) :).
 
Im in my late teens and had UC for the past 5 Years (ileostomy now), I myself didn't talk about my UC much due to embarrassment, I opened up more and more as it got worse and worse.

I think if your child doesn't have any symptoms and is in remission you should just wait and don't force the subject onto them, (not trying to jinx anyone) but they are bound to have the odd bad flareup in which they might open up more.

With my ileostomy im planning on having it reversed this year and my parents are bugging me to get into contact with people who have had it reversed, but right now im fine, I don't feel like I need to talk to anyone.

P.s I liked to talk to people over the age of 60 about my UC, they never seemed to judge and always gave good advice.
 
theri1 said:
P.s I liked to talk to people over the age of 60 about my UC, they never seemed to judge and always gave good advice.
Click to expand...

Good for you. Fantastic to hear from a modern teen who respect that over 60's have something of value to contribute (I think it's called wisdom and I'm still hoping to develop it at some point). I think that recognising that is a real sign of maturity in someone your age and a credit to you as a person.
 
Theri1: I think you hit the nail on the head. you talk when you need to, and who makes you feel the most comfortable. :) thanks for sharing.
 

Similar threads

Maya142
Surgery questions and experiences
Replies
9
Views
2K
Maya142
Maya142
F
does this seem like IBD?
Replies
33
Views
4K
my little penguin
my little penguin
R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
1K
ras96mg
R
Papantoine
Neglect?
Replies
0
Views
248
Papantoine
Papantoine
A
What would you do?
Replies
22
Views
2K
Delta_hippo
D

Latest posts

Back
Top