Teens with Ulcertive Colitis or Crohn's Support Group

Crohn's Disease Forum

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CourtneyHK95

CourtneyHK95

Joined
Feb 5, 2013
Messages
31
I thought this would be a good idea, because I know how hard it is to live with this disease and it could help to have other teenagers to talk to and get support. I hope this support group can help other teens like me. :)
 
Thank you. I just remember how hard it was for me being in the hospital or sick and not having anyone who had gone threw the same things as me to talk to.
 
What a great idea! It is always such a help just to know that you are not alone. I am very happy to have found this!
 
What do you guys think is the hardest part of living with IBD as a teen? For me, it's seeing my friends going out and enjoying life while I'm stuck in the bathroom. Not to mention, when I say I'm feeling bad and won't be able to make it to an activity, my friends always ask me what's wrong. I never know what to say. I don't want to be honest and say that my butt hurts from going to the bathroom so much, but I don't want to lie. I usually just ending up saying I'm tired and "feel sick".
 
I think the hardest thing for me is just trying to not miss so much school with all the flares I have and trying to live a normal life with my friends. I'm alittle more open with my friends about my condition so they understand if I don't feel well. I don't tell them all the details because it can he embarrassing sometimes. The one thing I always remember is that atleast I can have a somewhat normal life when there are some people that are a lot worse than me. It helps me sometimes.
 
I think the hardest for me is a miss loads of school when my crohns flare up. I try to lead a normal life but never happens when girls come up to me and say I don't want to catch this disease. I am so glad u made this group xx :)
 
People can be so insensitive sometimes. But hey, no one here is gonna say that. We are all in this together!
 
yeah ikr so many peeps like that :Z but yeah B) theres always someone who understands and are sympathetic, even if it is only on these forumss :p
 
i have really bad joint pain in my wrist and my back hurts really bad im 17, and I have ulcerative colitis. what did you guys do to help with the pain?
 
I get really bad joint pain, too. I went to a rheumatologist and she said it was not any form of arthritis, so now I don't know why I have it? I struggle with the pain a lot- nothing really helps it. Have you tried hot pads/ hot patches? Sometimes those help me. If your gut can handle it, Aleeve can be a little helpful as well. I wish I could help you more, but I'm in the same rut that you are in.
 
Hello, if anyone wants a chat or talk I'm always around. I Crohn's around 2 years ago when I was 16. :uk_flag:
 
I was missing a whole lot of school but earlier this year I started homebound and its a lot easier for me now
 
I am so glad I found this! Its support groups like these that will really help when your lying in a hospital bed on a million medications feeling rubbish. Its nice to talk to people who understand :)
 
I'm 2 months into another one of my crohns flare ups and I've been feeling so alone and scared. My bf might break up with me bc he's starting to get overwhelmed. I can't blame him, but still... 😞
 
SARAHMR0405 said:
I'm 2 months into another one of my crohns flare ups and I've been feeling so alone and scared. My bf might break up with me bc he's starting to get overwhelmed. I can't blame him, but still... ��
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I know dealing with a flare is hard, but you can do it. You are not alone, ever. All of us know exactly how you feel because we've been there too. I'm sorry you are having a rough time, but stay strong and keep your chin up.
 
Hi guys. I am starting Cimzia tomorrow, and was wondering if any of you have had experience with this drug? What's going on with y'all?
 
Hey guys, so I was wondering how open you are about your disease. I'm usually very scared to tell people. It's easy when they HAVEN'T heard of it before bc they only know what u feel like telling them. But when they HAVE heard of it, sometimes u get remarks like "isn't that the disease where u have to always go to the bathroom?" ...like hello!! Really??
So anyway, I was just wondering if u keep it private or if you have a "this is me, love me or hate me.. idc" attitude about it.
 
I try to be open about my Crohn's but it is hard. Sometimes when I am open, I feel like I get negative responses or no support. And it's hard, because you want to let people know what your life is like and get some support, but people just never seem to understand.
 
I'm very open about my Crohn's - I did a presentation on it as part of my GCSEs, hahaha! I think the more people know the less 'afraid' they are. And yes, I've gotten some stupid comments, like "I'd love to be as skinny as you,", but for the most part everyone is really good about it. I don't get much support from people that aren't my really close friends, but I think that's mainly because everyone else doesn't really know how to help.
 
I'm a bit of both really.
If I'm just meeting people for the first time (being a first year in uni there's been a lot of that!) I usually just say 'oh I have a stomach condition' or 'I'm not drinking 'cause I take meds for a chronic illness' just because I worry that if I said straight off I'd just become 'Vickie with Crohn's' rather than just me.
But otherwise I'm pretty open, especially to questions. I've done a presentation on it for my tutor group which helped them understand why sometimes I turn up looking a bit worse for wear! I had to tell my flatmates too but they have been brilliant, they make sure not to offer me snacks when I'm on a liquid diet, one did a presentation on Crohn's with me as a case study and one even got a question on it in their exam and knew the answer 'cause I'd been talking about it! Always good to be helpful :D

I have found when people know they are less likely to make insensitive comments. There's always the occasional one though...


& Essieluv, I've never had Cimzia but hope all went well for you and that it really helps :) x
 
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i think someone should make a facebook group kinda like this (i would do it but i dont know how on a ipad:L) because im on facebook every day and i only check this 1-2 a month, just think it would be more beneficial too us the teens;) just an idea........
 
Happy to have found this group :)

I have to say the hardest part is probably the treatments and medications, and the stresses involved with missing entire weeks of school during your final year of high school. It's daunting to know exams are coming up so soon that will determine whether I get the uni course I would like, and having missed entire sections of coursework! >.< I never in my life would have considered living purely off of a liquid shake until it really became my reality. Ahah.
 
This is a good idea. I am 13, only diagnosed only around 3 weeks ago. I don't know anyone with it only a few family members. Would be good to meet kids my age with Crohns :)
 
Honestly, the first month after diagnoses is the hardest. It's like you don't even know who you are anymore. But it does get better :)
 
Hey everyone, I was just diagnosed with Crohn's last week and am very confused with everything going on with my body right now. Crohn's isn't my first disease or medical problem but so far seems to be the most troubling, maybe because its new and I am scared of the "unknown." Does it ever get easier?
 
I'm super open with mine, i had surgery in June and now have a bag until november and am having part 2 of my surgery in a week. I really dont care what people think and show everybody my bag and let people touch the stoma through the bag...lol...i also named it Helen...i figured it would be harder to ignore it so i just embraced it even though its annoying as hell and Helen is a bitch
 
Hey guys!
I am 19, and I have had Crohns Disease since July 2010, but got diagnosed Oct 2012. I have been through so much these past three months, and I am now getting surgery within a month. I have other posts with all the stories! But I just wanted to let you know if you ever wanna talk or need a friend to vent to I am here! Thankfully all my friends are understanding and know that I dont feel well. And they understand I may be in the bathroom quite a bit of time when we are together. I usually only hang out with one of my good friends, but we are always together and she knows what to do or say if we are in a group and i have issues. I have a very supportive boyfriend and just don't know what I would do without all the support. I know not everyone is able to have this much support but I wanna be able to be there for you! So feel free to message me or add me on facebook or twitter and we can talk and just share experiences! I know for sure this isn't easy nor a pleasant disease, but we are in this together! ♥
 
Hi Marissa! It sounds like you've been through a lot. Do you mind if I ask what your upcoming surgery is? I have had six surgeries, but all of them have been on my bum because I have active peri-anal Crohn's.
 
Hi, I think I introduced myself before but im not sure. Anyways im 13 and about to have my first surgery :S
 
Hello! 17 year old just diagnosed with Crohn's here. Right now I'm about to start taking Humira to avoid getting 45cm of small intestine removed. Also just joined this site. Never joined a forum before
 
hi!
I'm also 17, also having Crohns.
I wish you all the best!

-i think its cool that forums like this do exist!:)
 
17 year olds represent? Ahah.

Welcome to the forum to all of you! I'm glad you found us. Don't feel locked into this one teen forum though, because it can be quiet in here. There's lots of useful information and great people across the entire forum. :)
 
I was wondering if anyone wanted to take over the Facebook page? I am really sick right now and can't do it, plus I'll be 20 soon, so not a "teen with IBD" anymore.
 
Quite open about mine, have always been laid back about it. Have had it for 4 years now never felt the need to talk about it to anyone else who had it or anyone, but recently the idea of me having surgery freaked me out abit felt like i needed to get some reassurance by someone who has been through this.:runaway:
 
emmaaaargh said:
I'm very open about my Crohn's - I did a presentation on it as part of my GCSEs, hahaha! I think the more people know the less 'afraid' they are. And yes, I've gotten some stupid comments, like "I'd love to be as skinny as you,", but for the most part everyone is really good about it. I don't get much support from people that aren't my really close friends, but I think that's mainly because everyone else doesn't really know how to help.
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I'm very open about mine too, I find it's nice to talk about it, it makes it more bearable for me.

Also this forum is great, we can talk about our problems with other people of the same age, great idea!
 
Hay guys I'm a little worried about what's going to happen in the next year and I thought you guys might be able to help. I'm graduating from high school this year and I'm a pretty good baseball player. I even got a scholarship to go play college ball. But the school is four hours away! Kind of scared to be that far from my family, they have really helped me through all this. Trying to grow up and start my life is going to be hard!
Anybody else kind of going through a similar situation? It would be cool to talk with someone about it.
 
Yes!!! I'm going through the same thing! I'm graduating and I'm so scared to go to college out of state. I'm scared that my disease is going to act up and I won't have anyone that understands
 
:dog:going college september actually growing after the surgery the idea of it returning is crap ut for now all is good :dog:
 
I'm 13 years old and i've had Crohn's since 2007, and I was just wondering if anyone here has had any exerience with Remicade/Infliximab?
Thanks!
 
I don't personally, but I know there are lots of other teens on here who are on/have been on Infliximab. Welcome to the forum, though - I was diagnosed in 2007 too! Hope you find the answers you're looking for :)
 
This is defiantly a great idea! If anyone wants to follow me on twitter to talk about this or just life in general, I'm happy to talk!! @emily_vet
 
somehow skipped remicide and went onto humira will probably have to use it in the future
 
Hi i'm Elisa and I am 18 years old. I just graduated high school and I've had crohns since I was 7. I'm new to this forum and It's really nice meeting other teens with this disease. It has really been challenging growing up with all of these problems. None of my friends understand it and they don't think it's that serious. I'm on a gluten free diet and lactose free diet so going out is hard. I am currently in a flare up so all I want to do is sleep. I've lost about 25 pounds from this flare up so my doctor is saying if I cant gain weight in a month then she will be putting me on prednisone and if that doesn't work then remicade. I am a little scared because I haven't been able to gain any weight. I have just completely lost my appetite. But hey i managed to achieve the impossible thigh gap! :lol: Thanks for the support!
 
Hi. Elisa :) I'm glad you joined this forum, I've had crohns since I was around 10, and now I'm 20 years old. I have had the problem of not knowing anyone with Crohn's disease but this forum makes you feel like your not alone. A lot of people I know don't think it's that serious but unless your going through it , it is hard to understand. I've been on prednisone countless times and it really helps and makes you feel amazing. Don't be scared, I've learned that you just have to trust your doctor and stay positive. I've also been on Remicade and it worked well for awhile. I am currently on Humira and have been the healthiest version of me .. Well in forever. If you want to talk I'm here to listen:) -Ali
 
Hey everyone, I'm Ciara and I'm eighteen :D I was diagnosed with Colitis (biopsies haven't come back about whether it's UC or Crohn's yet) but the doctors are thinking Crohn's. I'm actually loving this forum, I don't know about any of yous, but I've just felt so alone and down about all of this, I've been in a flare practically since New Years and it's just so exhausting!
 
How do you deal with school? I just got diagnosed with UC (in July) and I'm heading into 12th grade in the middle of a flare. It decreased, but I'm terrified. Any advice?
 
I found that it's best to try and keep stress to a minimum. *Kind* of an absurd thought when it comes to school, but you've got to remember that you and your health come first, and everything else will follow :) Don't feel bad for not being able to, I don't know, take part in sports, or participate fully in class - just take care of yourself. Everything else is secondary :)
 
emmaaaargh said:
I found that it's best to try and keep stress to a minimum. *Kind* of an absurd thought when it comes to school, but you've got to remember that you and your health come first, and everything else will follow :) Don't feel bad for not being able to, I don't know, take part in sports, or participate fully in class - just take care of yourself. Everything else is secondary :)
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Thanks for that :) I'm feeling a bit better. I know most of my teachers already and my schedule is relatively easy (well-to a degree. I have two AP classes but I also have a double art period in the morning which balances it out) Thankfully I don't do sports already and can't do gym (ah-the joint pain! I feel like a walking weather machine) so thats out anyway. Heck- I don't even really need to walk much probably. (I have a meeting- I probably would get extended time walking class to class and I ride the bus so I really just don’t walk much anyway)
 
I'm starting college in two weeks and I'm in the middle of a flare! Hoping everyone will be understanding :(
 
Hay I'm Hannah and I've had Crohns since just before Christmas 2010 which was a great Christmas present from the universe and ye I thought I'd join this forum/group and see how other teens deal with it all so ye hi :D -cough- if anyone plays league of legends on OCE add me WorstMissFortune -cough-
 
Glamcow said:
Hay I'm Hannah and I've had Crohns since just before Christmas 2010 which was a great Christmas present from the universe and ye I thought I'd join this forum/group and see how other teens deal with it all so ye hi :D -cough- if anyone plays league of legends on OCE add me WorstMissFortune -cough-
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You spent Christmas like that? I feel your pain. It sucks when it happens during something supposed to be fun.
 
I just joined today and found this thread. My mom showed me this website about a year ago and I figured I might as well start using it. I was diagnosed around June last summer after having not known what was going on for 3 month prior. I was in the hospital for three week and got released one day before my birthday. If I hadn't gone to the hospital when I did, I probably wouldn't be here right now. I guess we all probably don't favor the condition we're in right now, but you know what? I'm glad that I got it, because it opened my eyes to how truly precious life is. I might not always get along with it, but in a weird way, it helped me realize just how valuable life is.
 
Allegra said:
I'm starting college in two weeks and I'm in the middle of a flare! Hoping everyone will be understanding :(
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Hows that going?
Im at college at the moment an the idea of another flare up is worrying to say the least
 
Popping in to say hi. I was diagnosed two years ago at 15 and haven't found remission since. Yay wee...thanks body -.- anyway, I guess I was curious. Do any of you guys go through the whole "kinda depressed kiltering on an edge but just sorta perpetually meh" thing?
 
ZombiePenguin said:
Popping in to say hi. I was diagnosed two years ago at 15 and haven't found remission since. Yay wee...thanks body -.- anyway, I guess I was curious. Do any of you guys go through the whole "kinda depressed kiltering on an edge but just sorta perpetually meh" thing?
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All the time
 
man I have to say, I'm having a horrid few days. I don't know if you guys exoerience this, but the longer I've had my illness, the worse my skin seems to be getting. I hate going out in public without longsleeves. I have permanent scars from various rashlike but not rash things or the like on my arms and torso and just...hate it
 
I agree! My life with crohn's the last two months have been such a learning curve. I am falling behind in school because of all my doctors appoitments and also because of my flares. I would really like to see what you all have to say about crohn's and what you do to have a "normal" life...I just found tbis support group and I would really like to have teenage support!
 
Hey, I'm Laura, I'm 17 and was diagnosed with Crohn's this past December 2014. I'm currently having a bad flare, and will probably be having surgery to remove about 4 inches of bowel. Right now my days are popping pain pills (and the milliions of others they have me on) and trying to still function! Glad I found this forum where I can talk to others that know what I'm going through.
 
I guess introductions are here? Hey, I'm Evan and I'm 16 years old and was diagnosed when I was 7 (still needa fill out my profile). I think I used to have an account here but no clue what happened so cheers, but I like the new support group thing. I live in Colorado and was recently looking for a real meet up group, and might be able to visit one on Wednesday, can't wait to finally meet someone in real life who knows what's going on, I'm just surrounded by normal people :/ let's get some interests rolling in too; lomgboarding, mountain biking, snowboarding, doctor who, walking dead. Nice to meet y'all!
 
Looking at the comments about how insensitive people are shows, to an extent, how Crohn's makes us more sympathetic, understanding, and accepting, to name a few.
 
Hey guys, this is my first time really doing anything support group-ish stuff for my Crohn's disease. I have never really been open about talking about my disease.

My name is Laura and I am 16 years old. I was diagnosed when I was in 7th grade right around Christmas time (what a present :ysmile:) and have been dealing with it ever since. In these 4 years, I have had three surgeries for fistulas/abscesses (I don't really know the difference), tried a variety of drugs - I am currently on Remicade-, have dealt with hiding the disease from some my friends, and have struggled to maintain my weight. I hope that this forum can help all of us find a level of peer support for our disease that only those who also have Crohn's can give us.
 
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hey everyone!

I recently got diagnosed with Crohn's and am wondering, do you all not drink at all? What about Coffe? What types of alcohol aren't as hard on the stomach?

thanks

your fellow crohns sufferer
 
rru said:
hey everyone!

I recently got diagnosed with Crohn's and am wondering, do you all not drink at all? What about Coffe? What types of alcohol aren't as hard on the stomach?

thanks

your fellow crohns sufferer
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Well, I never attempted alcohol since my flare has never actually ended. (1 year and a half, its still bad) So I have little idea. But coffee? Caffeine wrecks my system. It is a deadly substance.
 
StarRibbon said:
Well, I never attempted alcohol since my flare has never actually ended. (1 year and a half, its still bad) So I have little idea. But coffee? Caffeine wrecks my system. It is a deadly substance.
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Agreed. All caffeine, sodas, or any other intense liquids are usually not good for IBD. My parents have talked to a dietitian and maybe you could, if you haven't already, talked to one about foods and drinks you should or shouldn't eat if you want to feel your best. :cool2::poo:
 
Since I am new to the support group, I will tell you a bit about me:
I am in 7th grade and was diagnosed for UC when I was in 4th. My mother has IBS and so I hope my sister doesn't get anything either :wub:. I am currently taking rectal enima, delzicol, and some over the counter medication.
:sign0144:
 
rru said:
hey everyone!

I recently got diagnosed with Crohn's and am wondering, do you all not drink at all? What about Coffe? What types of alcohol aren't as hard on the stomach?

thanks

your fellow crohns sufferer
Click to expand...

Stick with cider:drink:
 

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