Friend told people I had Crohn's

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James48

Joined
Aug 27, 2013
Messages
16
Location
Manchester
Hello all, I'm sorry if this is the wrong place for this thread. I know this is quite long, but please read and reply, I need your help.

I'm a 15 year old boy and I have recently been diagnosed with Crohn's. I have recently been in hospital for two months and as a result I missed a fair bit of school. Obviously people noticed I was missing from school and therefore decided to ask me what was up on Facebook.

I had already decided I didn't want people knowing I had Crohn's because some of the symptoms are, shall we say... Embarrassing? Even though I a lucky to not have diarrhea (I think it's due to the disease being in the small bowel or something?) but I know if people found out I had Crohn's and also found out what it can cause they would assume I would have ALL the symptoms. As we all know, 15 year old boys aren't always the most sympathetic so I was really adamant that no one should find out.

No one but one exception, a close mate of mine. I decided I would tell him and only him and he promised me that he wouldn't tell anyone. Of course, as a close friend, I trusted him.

Today, A week and a half after my operation where I had a foot of intestine removed, I came home. While talking to a few mates (not including him) on Xbox I got asked about my Crohn's. Of course I was shocked that they knew, and asked how they knew. I was told that my mate had told everyone (not literally, but a lot of people) about my condition as well as saying that I was on steroids and couldn't eat and it is also why I'm small (Which I'm constantly being picked on).

I'm really annoyed because I put all my trust in him and he told so many people. I'm really worried at going back to school now because I don't know how people will react. I have already explained to my mate how bad he has made me feel but should I trust him again? How would you feel if someone did this to you and how would you react? Thank you all, to all who reply, it means a lot that you have taken your time to read this and try and help me. Also I'm starting azathioprine soon so if you have any experience of this drug please post that as well. Thanks again.
 
It's definitely disappointing when a friend breaks your trust. I'd ask him why he told people after you asked him to keep it secret, and find out what his motive was.
Did he tell people so they'd be supportive of you? I don't think most 15 year olds know very much about Crohn's and I doubt they'll do any research. So don't assume what they'll assume. Hopefully, they'll be kind and supportive friends. BTW, there is a teen part of the forum. If you go to the main page, look in the support section.

Wishing you all the best!
 
Welcome to the forum, Bengals!

May I ask how long you've been diagnosed?

I know a lot of people prefer that others not know about their Crohn's. That's your choice - or it should be, anyway. It's very unfortunate that your friend told people without your consent, but like xmdmom, I'm wondering why he did so. He may have had good intentions and meant only for your other friends to be able to support you as well. However, that's no excuse to betray your trust. As for your question about trusting him again, that's up to you. Do you want to continue to have a friendship with him?

Personally, I'm very open about having Crohn's. I agree that there can be negative reactions, but I've been surprised to have almost entirely positive and supportive responses. I feel like being open and talking about the condition encourages people to be more understanding and aware, and therefore makes it easier for other people who aren't as comfortable being open about it, especially if a situation like yours occurs. I know it's an unpleasant situation, but hopefully you can find a positive side to people knowing as well.

I also agree with xmdmom that it's unlikely everyone, or even many people, will be familiar with Crohn's (unless another student in your school has it and is open about it, or something like that). If they ask, you don't have to tell them anything you're uncomfortable with them knowing. Personally, I tend to describe it as, "chronic inflammation affecting the digestive tract." You could opt for something like that as well. And if someone asks your symptoms, you can just say you'd rather not discuss it - or you can list off possible symptoms of Crohn's. If I were going that route, I'd name things like pain, nausea, fatigue, and weight loss. You definitely don't have to mention anything as awkward as diarrhea.

Long story short, it's very likely that no one will make a big deal of it. Try not to worry too much about it. :hug:

I hope things get better for you!

Also, we have an Azathioprine section of the Treatment forum if you'd like to read through that, or post there. You can find it here.
 
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Hi Bengals, I'm really sorry for all that you have gone through. My son who is a little younger than you had a hard time at school too. He missed a bunch of days and when he came back a group of girls were laughing and asked him if he had cancer. Then he missed 2 weeks of school for surgery on his perianal fistula, which like you, only one person knew about, but within a few days that changed when people were asking him about his "butt operation"
He was really upset at first but realizing that this is a life long condition, & hopefully he goes into remission but might not, this probably won't be the last time kids make fun of him. So it was hard but he just decided to own it. Things did calm down when everyone realized that he wasn't embarrassed by it all (although he was on the inside) Eventually it became old news and nobody really asked any questions like xmdmom said, they probably don't know enough to even have an idea. If anybody gives you a hard time I would just say something like "Really? That's the best you got? Making fun of somebody's medical condition...wow you are cool." I'm sure you could make it sound better, I'm just an old mom:lol:
Don't let anybody get you down...haters gonna hate, but you are on the upswing!
 
It is hard dealing with being newly diagnosed with crohns, especailly in high school. I was diagnosed at the age of 15 also 5 years later I have realised that it doesnt matter if people know or not. I was the same as you though I didnt want people to know or talk abour it. I had told two of my close friends and they did tell others but on top of that they made things up and spread rumors about things I didnt even have. But then im a girl and girls gossip and make up lies so its to be expected I suppose. I lost friends over the fact that they lied and made up things behind my back but out of that I found out who my true friends were and I actually found it better that they knew and tried to understand my condition. They helpes me in school when I needed it and they never once made fun of me. Honestly its better for people to know. Besides I understand its embarrasing but they are human too and have stomach bugs and sickness as well. Of course they wont understand what you go through. As for your close friend I would not entrust him like you used to and I would just be wary with what you say and let him knoe how you feel and hear his reasons. Then id just see how he is if he betrays your trust in the future or does anything not of a friednly nature the. I would move on and not be friends.

I have been on azathrioprine for 5 years. It works alright I just find it hard to remember to take the tablets sometimes. Im also on humira and hoping to come off it and just stay on azathrioprine. Any questions fee free to ask.
 
I'm sorry your friend told others about your crohns. I agree with above, while he shouldn't have said anything, he really may have thought he was helping.

My son was 16 when diagnosed and he was open with everyone from day one; actually posted it on his facebook while still in the hospital :eek: - I wasn't sure if that was a good idea but he didn't see anything wrong with it??? And, perhaps because of his openness about it, everyone has been supportive - from his hockey teammates and coaches to friends to teachers. I'm not sure how much detail he tells them but, perhaps because he answers questions so readily, it leaves nothing to anyone's imagination, so not a whole lot for anyone to talk about... but I agree with SarahBear - you can answer questions without getting into details that make you feel uncomfortable.

But, I am sorry you've been forced into this situation!

By the way, being 'small' may change... active inflammation very often causes malabsorption... hopefully, being on treatment now, you may see a difference in your growth pattern. :)
 
I understand your being upset with your buddy for not keeping your secret. I mean he should not have shared your info since you did not want it to be shared.

Some kids can be real jerks and can be down right mean. My sons best friend has crohns and I know he did not tell anyone about it either at first. He was 16 when he got diagnosed but was sick for over a year before he got diagnosed. He was put on prednisone and another med for 6 months. He is now 21 years old and he is doing well, not even on any meds. Hang in there, it will get easier. People can be so ignorant at times, you just have to ignore them when rude things are said.....
 
My 16 year old son wanted to tell everyone right off the bat, also posted on fb while still in the hospital. He had been picked on a little in weight class when he couldn't lift much and after he was diagnosed, he dared people to make fun of someone with a chronic illness, as it would make them seem like jerks. So far his peers have been mostly sympathetic and supportive.

Yet, he didn't want to go to school when he was experiencing really bad gas, right after diagnosis. That would have been too much for him...

I love him, but that was some smelly gas!
 
Oh man, I'm sorry you have had to go through so much. I know it's hard when people know that you have a "pooping" disease, but it's also pretty cool. I mean, how many people can say they don't have all of their intestines? Or that they had pictures of their bowels? You could totally brag about that and make people jealous :p I think it's important to remember that, no matter what people say or think about you, you are AWSOME!! You rock!! And no one will ever be able to take that away from you. What does it matter what other's say, especially if they don't appreciate the ability to make hospital gowns a fashion statement like I'm sure you did? Whatever happens, please remember that we are your friends here. Stay strong!!!
 
To make it worse he didn't tell people not to tell people so they have gone on and told their friends :/ And thanks for the help, much appreciated :)
 
Sorry to hear about your situation. First off... welcome to the Forum. A club no one really wants to belong to. Membership really doesn't offer much in the way of privileges.

Couple of thoughts... my first being that, from the way you express yourself, you are extremely mature for your age. I wonder if your best mate is anywhere near as mature. Now, some folks can keep a secret.... for others, it is mission impossible. They mean no harm... but they just can't seem to bottle things up... or box things in. Know what I'm saying? He may be your best mate, but if he is one of these effervescent types... well, it is sort of like asking water to turn to stone... no matter how hard it tries, it continues to babble.... eeer, bubble on. Sort of like asking a Crohnie not to pass gas. Can't be done, can't be helped. Another thought... and this is something that, despite your very advanced maturity you may not have considered... you probably had more info about your disease.. your condition.. your surgery... than your mate did. What he didn't know may have worried him... may have terrified him. He might have broken your trust simply as his way of coping... with the fear, with the worry. I don't know if this is what made him do this. But, neither do you. Which raises the question... why ask 'us' to guess why he did what he did? Why not ask him? This disease can take so much away from us, things we have no control over. I'd hate for it to cost you your best mate because of this. Yes, he broke your trust... why no one knows.. but him. My advice??? Ask him why... why he did it. Then decide if his reasons, his motivations were good, or bad. Or just young and immature. As you've demonstrated, age does not define maturity. I can tell you something I've learned... the hard way... with age. Time can take your friends from you... and having friends... true friends... is something you can't put a value on.
 
Hiya Bengals

Try not to fret, I know that's hard. Some things what you can do ;
1. Remember, even cool peeps get this disease, Dynamo has it! Read all about his struggle online.
2. Download some pdf info on IBD and school from the Crohn's and Colitis Uk website and if there's a teacher you trust, tell them, you're entitled to toilet breaks and adjustments.
3. Invite your mates round to your house, have drinks and food and educate them, I did this once and did a fab PowerPoint presentation!
There is nothing to be ashamed/embarrassed about, it's inflammation, just like an inflamed knee after too much footy.
The stigma/taboo attached to it is, diarrhea, so don't mention it!
Good luck with the azathioprine xxx
 
I know it's probably not much of a comfort to hear it now, but as you get older you will probably find diarrhoea less embarrassing, and your peers will become more sympathetic. I had a very close group of friends at school who were always understanding of me, but that didn't go for everyone in the classroom. But by the time I went to uni and had to meet a whole new load of people, everyone who knew about my problems was fine about it - or at least were polite enough to act as if they were. I won't say it doesn't happen, as I'm sure there are instances where it does, but if you're worried that people will engage in petty bullying or tease you about your illness, I found that type of behaviour was pretty much non-existent in both sixthform and uni.

There will be people out there who are accepting and understanding even at your age, so give people a chance. But you'll grow up very fast and you and your friends will become more mature. I was terribly embarrassed about my illness when I got ill in my early teens. Now embarrassment because I have diarrhoea - and even incontinence at times - isn't really a part of my life anymore. I've got used to these symptoms, people who know me have got used to them too. I have so many more important things to think about now than worrying about being embarrassed by bowel problems, even though at age 14, 15, 16 I couldn't imagine a day would come when I wasn't mortified by them.
 
Well the whole school situation has got worse. One group of friends for some reason have something against me now. I thought if anything they would look out for me more now I have been seriously ill but instead they started saying things behind my back on a Facebook conversation (Which someone invited me to so I saw what they said)and I just wish I went to sleep some nights and never woke up. The past months have been hell and nothing is getting better
 
I can relate this situation. I didn't tell anyone I had crohn's for at least 5 years and it was 7 years before I met another person with crohn's.
Not telling people, caused closest friend to think I didn't care about them, and that I was pushing them away. I was unintentionally. I didn't tell professors, so they dropped my grade for attendance issues. It has become a major goal for me to tell more people, but I still find it very hard to do. After 10 years, I have come to realize that no one cares if you have crohn's, but they care a lot if you tell them, because they care about you. I went from being extremely athletic and strong, to dropping 50 pounds rapidly. Not telling my teachers and friends made people guess what was wrong, and that could be even worse.
 
Im sure your friend did it in good intentions. Maybe he was letting people know how you are as people were worried about you (also people will gossip if they dont have the full story, once they know it becomes old news)

I'm not bothered if people know. I have enough to worry about than keep something like this a secret. It also helps others understand when you arent feeling too great. I have also found a lot of people who have the disease due to talking about it, and it turns out you arent alone.

I think you have to weigh up how good a friend he is and in the whole scheme of things is others knowing about your condition really that bad?
 
I was in this situation a little bit in primary school. I was diagnosed when I was 9 and wanted to keep it all my shameful secret - but by the time I went to secondary school I thought, screw it! I'm not going to let this ruin my life, if they don't like me because I'm ill then they're judgemental jerks and aren't worth my time of day. There have been a couple of rude comments and some ignorance but on the whole people are supportive. There will always be people that don't get it, but you don't stay in school forever. I went through a totally friendless period in Year 8 and 9, and realized that... well, it's not so bad. Okay, I'm rambling, so I'll try to keep this short. Even if they have something against you now, eventually they'll be out of your life. If you keep your chin up you'll be stronger for it and prove that you're stronger than them. :)
Sorry this was so long. I hope it helps a little - I hate it when this disease gets people down ):
 
My sisters told a lot of people at school because they were concerned for me and they want people to know what I was going through so that they could help me.
 
Try to brush it off when someone asks you about it, pretend it isn't really anything if you don't want to go in to details about it. I'm just glad a lot of people are very supportive and actually want to learn more about it, it helps me with handling that situation a lot.
 
Dont worry man, im 17 years old in my senior year of high school and everyone knows I have Crohns, im pretty open about it and what i have found is that most people have no idea what the heck it is, so i try and educate them a little bit. Most people just say "that sucks" and thats that. Everyone in high school is just worried about themselves and the last thing they will really care about is that kid with the stomach disease, and if anyone does have a problem with that, then they're not a good friend and I would just leave them alone. You will find supportive people, trust me man stay strong
 

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