My 13yr old daughter has crohns :(

[daughterw/Crohns]

Hello everyone! I decided to join to seek advice, read similar stories, and hopefully get her my daughter to consider joining. She has a very hard time dealing with her symptoms and i always feel helpless as to how to help. She also feels very alone in that no one knows understands what she's going through. She's on hyociamine, ondasteron, as needed. As well as Remicade every 5-6 weeks. I'm looking forward to interacting with you all! Hope everyone is having a pain free day!:ghug:

 

[carrollco]

Welcome! Although I am an 'old' crohnie I know someone will come by and point her toward the teen group. It is normal for her to feel this way and normal for you to worry. This is a good place for you/her to find comfort. Welcome!

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.

 

[daughterw/Crohns]

thank you

 

[Farmwife]

Hi and welcome,
I'm so sorry your girl has to go through this.
I'm glad you sought us out.
In the parents section, theirs mom and dads that have been and many still going through what you are now.
Here's the LINKI encourage you to stop by and introduce yourself and your teen.
I'll tag in DustyKat, CarolineAlaska, crohnsinct, Sascot and theirs many more that will be of help.

HUGS

 

[Farmwife]

Clash , Tesscorm , Jmrogers4 also have teens.

Hugs

 

[crohnsinct]

Hey there, we are in CT and my daughter just turned 14. She is also on Remicade. We are both here to answer any questions and lend an ear. My daughter isn't on the forum but has agreed to email, facebook some of the kids here.

Not sure where in Mass your town is...do you go to CCMC or Boston Children's for treatment?

 

[Jmrogers4]

Welcome my son is 14 and he is not on the forum either but does facebook, text, email, etc. He will always correspond with another Crohnie. No experience with remicade but my son has been on Hyoscyamine (Levsin).
How long ago was she diagnosed? Has she/you thought about camp? There are camps around the country run by CCFA (Camp Oasis). Camp was a huge help for Jack gave him a chance to meet kids in our area that also had Crohns and while they talked about it some at camp it was mostly just having fun and being around other kids dealing with the same thing.
He regularly texts and plays online xbox with a few of the kids from camp.

 

[allyssa]

I was diagnosed at 17, right before my senior year of high school. My doctor decided that we should start with the most intense treatment he called the inverted pyramid. He put me on Remicade and after the first couple of infusions (I went every 4 weeks), my symptoms were more controlled. The medicine itself made me feel pretty awful the next few days but it was manageable.

The emotional problems were difficult to manage for me. When I was diagnosed I had never heard of Crohn's nor what it meant. The idea of not having a cure wasn't fully grasped. I didn;t want to talk to anyone about being sick and I didn't accept that I was sick until I had to leave college because I couldn't handle it. I was in the ER or hospital every other week.

It gets better. Not so much the sickness but my attitude and ability to understand became better. I understand that I won't be normal, and that I may not be able to do the things normal people my age (22) can, but that doesn't mean I can't live.

 

[David Abe's]

Hello everyone! I decided to join to seek advice, read similar stories, and hopefully get her my daughter to consider joining. She has a very hard time dealing with her symptoms and i always feel helpless as to how to help. She also feels very alone in that no one knows understands what she's going through. She's on hyociamine, ondasteron, as needed. As well as Remicade every 5-6 weeks. I'm looking forward to interacting with you all! Hope everyone is having a pain free day!:ghug:

Hi I started with crohns at 13 and had a very hard 6-7 years after, but tell her to keep her chin up and don't let it get on top of her, it's tough but with family support things will get easier x

 

[GIGI69]

I was a teenager when I first got sick. I hope your daughter decides to join. Welcome to the group

 

[QueenFox]

Hi there,

I was diagnosed when I was 14 with Indeterminate Colitis and not only did it come as a shock to me, my parents were beyond shock. They just didn't know what to do, were often frustrated and felt helpless as treating this disease is complicated, indefinite and everyone's story is different. They found comfort in talking to nurses and support staff at the hospital, keeping their sense of humour and just sitting down and talking to me like a normal human being.

As a 14 year old I did become overwhelmed at times and just needed a parental figure around to help me discuss treatments, surgery, my feelings. When I did start getting better keeping myself busy by doing semi-normal activity helped greatly and made me feel I was just like every other teenager (at that age you despise being too different).

I hope you both hang in there and can be a comfort to each other!