I'm only sixteen :(

[tlc-x]

What does your average 16 year old do these days?
I know i'm 16, but I can't tell you, because I don't know anymore.

I spend my life curled up on the sofa with my cat or sat on the sofa wrapped up with a blanket, cuddling my cat and on the laptop.

I don't do much with my life anymore. I don't even know what this illness is. I've been poorly for years, but realised that something wasn't right 2 years ago. I've been under going tests for the past year.

Crohns and UC run in my family, so it's probably one of those two.

I've lost friends because of this illness.

I did badly on my GCSEs because of being off school so much. I slept through my school holidays and didn't go out much.

My life is planned around toilet trips and stomach pains. Whether i'm healthy enough to go out that day or if i'll just sleep.

Friends lost patience with me because I was always cancelling on them, and they don't understand how much pain I am in at times.

It feels like no one is taking me seriously.
"Oh, she's just a teenager trying to get out of going to school/college"
"It's just a bug, she'll get over it"
"When is she gonna grow a pair?"

Okay, so no one said the last one... yet.

Not even my own brother understands and we're fairly close... well we were before he moved out to London. My sister lives in Reading, and is always too busy for me really, but she does understand. My mum understands and my grandparents do as well.. after all, these illnesses run in our family. My dad is always too busy as well, and we don't talk much.

I get really down because of the pain and being ill and missing out on things. I wouldn't say I have depression, but I do get extremely depressed at times and the doctor thinks I am depressed and just getting a tummy ache from that and sleeping a lot because of that. Which I know isn't true.

Does depression make you feel like your tummy is gonna explode from pain? No.. not really.


Reading some of the posts on this site scares me... the pain a lot of you have gone through, knowing it will be my turn to get 10x worse than I already am. To know that I will be curled up in a ball of pain, screaming and taken to hospital. It's almost happened, the pain has been unbearable... but i'm scared of when it will get worse... and until I am in that worst agony ever, the doctors won't help me.

:thumbdown:

 

[Artificial]

I spend my life curled up on the sofa with my cat or sat on the sofa wrapped up with a blanket, cuddling my cat and on the laptop.

...exchange cat for dog and that's pretty much my life to and I'm 23.

Not really sure what to say as I pretty much feel the same. None of my friends seem to bother with me either but just wanted to know you're not alone!

Try not to worry about hospital visits / pain getting worse etc (easier said than done i know!) it does seem to be different for everyone so doesn't necessarily mean you'll get worse.

Hope you feel a bit better soon x

 

[Astra]

Hiya Tasha
I've replied to your other thread about getting into A&E, things don't have to take a turn for the worse before you have to go, it's your right as a UK citizen to be treated.
As regards to your isolation, how about you gather up some mates and get them round to your place to talk about IBD? Provide some snacks and drinks and talk to them.
There is no awareness in this country about the illness I'm afraid, people assume it's just diarrhea.
If you go onto the Crohns and Colitis UK website there are loads of downloads for you to discuss with your friends. I did it with mine. Once people start to understand, it does get easier I promise.
Try not to fret about stuff that you read on here, remember we're all unique in our symptoms.
We're all here for you, don't suffer in silence, take care
xxx

 

[lollypop]

...exchange cat for dog and that's pretty much my life to and I'm 23.

Not really sure what to say as I pretty much feel the same. None of my friends seem to bother with me either but just wanted to know you're not alone!

Try not to worry about hospital visits / pain getting worse etc (easier said than done i know!) it does seem to be different for everyone so doesn't necessarily mean you'll get worse.

Hope you feel a bit better soon x

i second this,im 28 now but had my illness since i was 12 yrs old...im trying to hold down a part time job but really struggling with hospital visits every few weeks and meds making me feel even worse then my illness on occasions!!
i too have lost friends and boyfriends as they cant cope with my illness infact i cant even move out of my parents place like i really want to, due to the fact im too ill and cant earn enough to afford a place because of my crohns.. so your not alone!!

 

[vonfunk]

I was never as bad as I was when I was diagnosed, mainly because they were able to treat it.

For a lot of people pre-diagnosis is the worst part. It'll get better.

 

[Crohns2011]

I'm only 23 and I'm freaking out about my Crohn's.....people keep telling me to get better but they just don't get it! I told them this is lifelong! They say I'll be normal again but I say from posts I read many people's flare ups last 2-6 years or more! :O I'm scared and sad that I no longer have a functioning life!

 

[lollypop]

I'm only 23 and I'm freaking out about my Crohn's.....people keep telling me to get better but they just don't get it! I told them this is lifelong! They say I'll be normal again but I say from posts I read many people's flare ups last 2-6 years or more! :O I'm scared and sad that I no longer have a functioning life!

i second this...its just a horrible feeling knowing no one else close to you is going thro the same and as for living a normal life im begining to think i never will the rate im going altho i cant say the same for everyone on here!!

 

[tlc-x]

A few of you are saying how no one close to you is going through the same... isn't crohns something that runs in the family?
My aunt, uncle, grandad and cousin all suffer from either crohns or UC.

 

[DustyKat]

Hey Tasha,

For some people they are indeed the only ones in their family with IBD which is even more isolating for them.

When my daughter was diagnosed, other than a cousin of my husbands, she was the only one and I knew it must have been so difficult for her. Then Decmeber last year my son was diagnosed, as much as it sucks I am grateful they have each other and I don't doubt for one minute that it has brought them closer together.

Dusty. xxx

 

[lollypop]

A few of you are saying how no one close to you is going through the same... isn't crohns something that runs in the family?
My aunt, uncle, grandad and cousin all suffer from either crohns or UC.

they say it tends to run in the family altho no one in my family has it and looking back into generations we cant seem to find anything!!

 

[tlc-x]

they say it tends to run in the family altho no one in my family has it and looking back into generations we cant seem to find anything!!

Ohh

 

[lollypop]

Ohh

not that i would wish this illness on anyone but sometimes i do wish i had someone in the family who understood what was going on and could help me at times!!

 

[DustyKat]

not that i would wish this illness on anyone but sometimes i do wish i had someone in the family who understood what was going on and could help me at times!!

I know what you are saying hun...:hug:

I hate that both my kids have this bloody disease but I have seen the help and support that Sarah has been to Matt since his diagnosis. I do all I can but I can never have that deeper understanding, the unspoken knowledge, that a fellow sufferer does.

Dusty. xxx

 

[Brian'sMom]

Tasha,
I read your post and I wish there was something I could do to make you feel better about things. My first thought is, if you lost friends because you have this...those are not friends you want to surround yourself with anyways...ibd or not. I like Joan's idea. Your friends you do have and even your family...educate them. Maybe they are scared of saying the wrong thing to you(simply cause they don't know what IBD is)...so they choose to 'not talk about it'. Possibly an open conversation so they could try to understand what you're feeling and what your living with will be good. Especially with your parents. I also think 'Dad's' hide their feelings because they are trying to appear strong. I hope things get better for you, physically and mentally. And last, but not least, don't fill your head with the idea that things are going to get worse. Don't do the "What If?" thing.

 

[Crohns2011]

A few of you are saying how no one close to you is going through the same... isn't crohns something that runs in the family?
My aunt, uncle, grandad and cousin all suffer from either crohns or UC.

My only "real family" is my parents and my twin sister......from what I hear the other people in our family that we don't talk to EVER do not have Crohns! Nobody has ever had any bowel problems EVER! So I'm the only one dealing with it!

 

[Emily]

Hey Tasha, just wanted to pop in and say hi You are not alone, we're here to get you through it. This forum is an amazing resource and there are many here who are still going through the pre-diagnosis phase. My own mom has IBD, so I certainly see the family ties, and it'd come as no surprise if you have it with all that history in your family. Many people here are your age, I'm 19 and thankfully was able to proceed to college even despite some IBD setbacks. It will get better! Keep pushing vigilantly for all the tests and good doctors you can. Once you get a diagnosis, things can start heading in the right direction. :hug:

 

[Inwe]

I was diagnosed when I was 17 so I know how you fell about the age thing. Honestly, when reading your post, it sounded like it was me writing it. I've dropped out of university 3 times. I won't go into the crazy details, let's just say it sucked.

I've lost friends to this disease too. One so called "friend" even went behind my back in high school (before I was officially diagnosed) and started saying all this **** that I was "milking it", "faking it", and my personal favourite "Lying to be the center of attention". We had had our problems before this, but her saying this stuff was the last straw for me, and *BOOM*I stopped talking to her. I really only have one best friend who I know will truley be there for me and isn't bothered by me cancelling all the time (I missed her sweet 16th birthday, her 18th, and her 19th (big for us here in my province 'cause its our drinking age, haha) and 21st birthday). I know my friends have said things to me like "I wish I was as skinny as you!", "But, you don't look sick", and "Oh, it can't be thhhaatt bad". I really wish I had friends who had the disease too, just for the whole "misery loves company" angle.

I always want to punch someone in the face when they say "You'll get over it" or "think positive!" Arg* I get depressed too, mine is more severe anxiety though. (see my post on the mental health board). It's hard to feel happy when you're sick. When I was diagnosed in the hospital, some brilliant person sent in a psychiatrist to talk to me right after I was diagonosed and I started crying pretty hard. He sat down on my bed and said "Why are you sad? Are you usually sad?" OMFG... I wanted to punch him in the face! I was just diagnosed with a chronic incurable illness, I'm just f-ing peachy! tsk tsk.

Some of the post on here scare me too, but I read the subjects and try to avoid posts with subjects that don't afflict me. I'm a bit of a hypochondriac so I avoid a lot of posts. Though I am greatly those posts exists, because if I ever do need advice or just to talk, it's nice to know I'm not alone.

I hope you feel better. I suffered for years with symptoms before I was diagnosed. I would stress getting a colonoscopy, it's the diffinitive test to find out if you have crohn's/colitis. It sucks, but in the end it's what diagnosed me. I don't know what healthcare or your doctors are like where you live, but hopefully you can get that test asap.

 

[sparkles]

tashaliannex your post made me cry im 18 and i was diagnosed when i was 12, and i know exactly how you feel all i want is to be a normal teenager and do what normal teenagers do. noone understands what i go through but i cant tell anyone about it because it just seems pointless to complain. my family are really supportive but i still dont feel like i can communicate my emotions with them. my friends, the few that i still have, dont even know the details of my illness let alone how i feel.
its so hard but seeing all these other people on the site with similar issues makes me feel like im not alone <3
thanks to everyone on this lovely site

 

[tlc-x]

tashaliannex your post made me cry im 18 and i was diagnosed when i was 12, and i know exactly how you feel all i want is to be a normal teenager and do what normal teenagers do. noone understands what i go through but i cant tell anyone about it because it just seems pointless to complain. my family are really supportive but i still dont feel like i can communicate my emotions with them. my friends, the few that i still have, dont even know the details of my illness let alone how i feel.
its so hard but seeing all these other people on the site with similar issues makes me feel like im not alone <3
thanks to everyone on this lovely site

Ohh I didn't want anyone to cry! Sorry! *hugs* We can all get through this together This site is really good, and i've only been here a few days. Stay strong!! xx

 

[DougUte]

Tash, just an idea. See if you can find others on the forum in the Dorset area and start getting together with them. We have been doing that in my area and it has been really nice to really meet people that are having the same problems I am. Nobody else in my family has Crohn's or UC, so I have felt very alone in this. I know where you are coming from.

 

[tlc-x]

I shall do my best Thank you.

 

[Brian'sMom]

I get depressed too, mine is more severe anxiety though.

My Heart goes out to all of you. I can't begin to imagine what you're dealing with. I've had depression and anxiety feelings and it's my son that has it. I can't imagine what you all go thru. My boy is only 11, I pray when he's older he doesn't have incidents like you've had with these mean kids at school.

I pray for a cure whenever it enters my mind...which is ALWAYS!!!!!

 

[maggi]

im only sisteen

Hi Tashaliannex, my name is annie, and i`ve had crohn since i was 17 years old, and i understand what is happening to you. At first the doctors would say that is was the flu and that it would go away, but after suffering for a month and losing almost 20 pounds, cause i would eat and go right awayn to the washroom, and in was so week, dehydrated, and in pain, son i decide to go back to the doctors and demand that i pass some test cause i could not take it anymore. That is when they found out i had crohn. After that i had too take medication to control the disease. Don`t let yourself down, they need to find out what you have so they can control it so you could feel better. We need to be heard. TAKE CARE OF YOU.

maggi

 

[tlc-x]

Thank you Maggi, means a lot xx

Inwe, I suffer "increasing" anxiety too, after something horrible that happened at school - non related to the illness. x