Crohns ruining my childhood

[Alec1]

Hi I'm a 15 year old boy living with crohns. I was diagnosed when I was 13 and this disease has completely ruined my life. I've been in the hospital once already and have only reached remission for a couple weeks.i have to give bloodwork at least 3 times a month because of my changing medications and I'm currently using prednisone because of a flare.

I hate everything about myself and everything this disease has done to me. I feel like **** all the time and I'm never happy with myself. Crohns and steroids are delaying my growth which makes everything 100x worse. I'm 5'1" 88lbs and I'm not getting anywhere. I used to love sports and I was an amazing athlete too. Now I've gone from MVPs to sitting on the ******* bench. And it's solely because of my symptoms restricting me.

I have a lot of friends and none of them know about this disease but people are starting to notice things. I'm a teenager and I want to do what teenagers do. I've had to pass up on drinking with friends or going to parties all the time because Alcohol and crohns don't mix. I feel stuck and helpless because I'm not getting to enjoy my childhood at all. They say being a teenager is supposed to be the best time of your life, but not a day goes by where I don't feel terrible about myself. I should be care free and happy but I almost never am:/. I've had constant thoughts of suicide but something holds me back. I don't know what to do anymore. Just wanted to put this out there so people who know what it's like can give me advice

 

[GutlessWonder86]

Alec, you need to talk to your GI about feeling lousy so he can try something else. Also, ask for something to assist with the pain.

Talk to your parents and let them know that you are not any better. If you are having these thoughts, you need to tell your folks immediately.

Be sure to check out this support forum as well. There are others like yourself facing similar circumstances.

 

[LodgeLady]

So I am going to post some things you may not want to hear (read).

First, you are going through a life changing event. It is not fair. It is painful. It is a crappy disease. But it's not going away. So now its time to deal with it. We would all like to have been something that we ended up not being. Sports are your passion. I get that. Now life has dealt you a different set of cards.

We all here on this forum have to deal with Crohn's. We have families, jobs, commitments, but we have to find a way to deal with it. Same with you. Now you may have to focus on another area of your talents. What else are you good at? Can you do it while dealing with your Crohn's? This is where soul searching comes in.

Talk with your doctor. If your not comfortable with your parents, find another adult who you are comfortable with. There is support out there, I know its hard to find. Ask away here on this forum. Everyone is in the same boat.

Lastly, once you get on the right drugs, you will have more of a normal life. Get mad at this disease and be determined not to let it get the best of you. That's what I do. I am not going to let it beat me. Have faith..:ghug:

 

[CrohnsChicago]

Hello Alec

I'm very sorry to hear you were diagnosed and at a young age. I always thought it to be especially not fair for younger folks to have to go through this because there are times where it really prevents you from living out your childhood to the fullest.

BUT that doesn't mean you can't still have a childhood. There are times where it may not always be exactly how you pictured it but it doesn't mean that it's not possible for you to have fun and enjoy the things you used to. What having crohn's DOES mean is that you will have to learn how to take better care of yourself so that you can eventually enjoy the things you love again.

It may take some time (no matter what age you are ALL of us here know how much crohn's puts a halt on living your life because of symptoms, pain, bathroom visits, side effects etc...) but once you find the right treatment plan for you it IS possible to live a pretty normal and healthy life again

If you are really having a hard time dealing with it (which it sounds like), you need to let your parents and your doctor know. Crohn's can be a really hard thing to explain to people because it's an "invisible" disease that is really hard to explain to people in a way that makes them truly understand unless they have experienced it themselves. We look fine most of the time on the outside and because we don't have any bloody wounds or other things to show that we aren't well people don't always realize how sick we actually are until it gets really bad. This is where your doctors come in to help find treatment to make you feel better. It's going to be very important for you to be able to talk to your doctor about your symptoms and experiences. He can't help you get better without knowing everything that you are going through: the good, the bad, and the ugly.

Support groups like this forum are good places to find information and others that get what you are going through so you don't feel so lost and alone.

We also have a support group for teens where you can try and chat with others your age about living with crohns:

http://www.crohnsforum.com/forumdisplay.php?f=67

It may not happen overnight, but if you take good care of yourself while you are figuring out the right treatment plan, things CAN get better. :hug:

 

[Brenden]

Both me and my ex-girlfriend were diagnosed early in high school and we didnt let it control our lives. We still went out to parties and had lots of fun. Im not condoning under-age drinking but we used to get pretty drunk even though we both had crohns. Obviously we didnt make a habit of it but once a month didnt seem like a big deal. Crohns will only ruin your childhood if you let it.

 

[Alec1]

Thanks everyone. There's always days where there's ups and downs I guess. I try to pick my battles and stay positive and when I do I feel really great. But other times it seems impossible to ignore it. Thanks for the tips and support

 

[Jmrogers4]

Hi Alec, welcome to the forum.
My son is 14 (freshman in high school) and sounds a lot like you. He is also 5'1" and 88 lbs. Loves sports and has always been athletic. He loves football and has always played until this year when he had a flare after the third practice and was put on EEN (liquid nutrition) just couldn't play. He has stayed a part of the team, helping the coaches or videoing the game or just getting the team hyped to play. I know it sucks when you want to be out there playing but don't let the Crohn's make you give it up all together.
One thing that has been a tremendous help for my son is going to a camp in the summer for kids with Crohn's or Colitis (they have them all across the country). He met other kids dealing with the same stuff and has them to call, text, snap chat, facebook with throughout the year especially with those things no one else gets...
I will tell you when you get the right combination of medicine that works you, life is fairly normal and growth happens. Hang in there and whenever you need to vent, this is the place.

 

[PsychoJane]

Hi Alec,
I was also diagnosed as a teenager. Thankfully for me, I never really enjoyed sports (let say the usual we play in high school) so I never went through that loss, but I used to do sailing and had just started training for biathlon prior to diagnosis. Unfortunately, I had to give up on those as the illness was restraining me to access the cadets where I use to enjoy these for free, else, it was very expensive and I could not access these passion financially at the time. Needless to say, it sucked...

During about 3-4 years after diagnosis I was going with ups and down just like you do, being upset about the "unfair" reality coming with the fact I had to cope with this disease. As far as parties go, on my side, I had been going through so much that it was mostly fear that was keeping me from drinking and smoking with my friends (not that I would encourage you to do so but I am realistic, this is a part of teenage life). But remission came and I've learnt to deal with my limits. Sometimes you will pay the price for the excess, that's why you got to live, with moderation.

The period you are going through is most likely the hardest, I mean, it's already tricky to be a teenager. You said it is suppose to be the best time of your life, well, maybe it won't be but in my opinion, my twenties are much better than my teenage. There is hope ahead for your.

Also, when your medication gets right, in theory achieving remission, you will catch up on growth delay you may have encounter. I remember being the only one that kept growing when I was around 18-20. Everything had been delayed by a few years for me but I did catch up. Sports talking, I have a friend that has UC, in his early 20 and believe me, he is the MVP out there now that his disease is under control. It takes time, but time will come.

I won't lie, it's rough sometimes but hang in there and stay strong. This disease was the best and the worst thing that has happened to me. As hard as it can be, it has allowed me to enjoy every little things a bit more than Mr.Everybody. I don't lack ambition, but little things fulfill me and that, in the world we live in, makes me happy it happened. Maybe will you understand in the time being, when you feel great, you go out, it's sunny and you can feel like your life is near perfection just for the fact your are healthy.

I understand we sometime needs to vent all these frustrations, feel free to do so whenever you need and don't give up on hoping thing will be better

 

[jsesaic]

I totally relate to nearly everything you said! Although i was diagnose a bit later in life (i was 16), i feel that i have missed out on a lot. When my friends are out enjoying life and i'm ill i do get down
And i do think it's hard to be 'carefree' and upbeat when we go through so much! In my opinion it is a very restricting disease when your this age, but i guess we have to live life regardless. The best thing to do is focus on what we can do
I'm lucky that i have 3 best friends who know every little detail about my illness but if you don't feel comfortable telling people you know, maybe make some friends online and talk to them It might help that people have been through similar experiences!

 

[mccindy]

Hi, Alec.
It really sounds like you are going through a tough time right now. I'm not going to say that you should just get used to it, because for you, that's not working. Finding out you have a chronic disease and having it affect so much of your life can be so painful and difficult. Not being able to eat foods that everyone else is eating, or participate in the activities you enjoy, or just have fun with your friends is horrible.
I want to address one thing that you said - "they" might say that your teenage years are supposed to be the best of your life, but that is not true. Most teenagers, even those without illnesses, struggle with the pain of puberty, growing and changing, the developing brain and going to school every with many other people they may not like or get along with. Also, how depressing would it be to live to be an old person when your best years happened right at the beginning?
You have so much life ahead of you. Crohn's is a (literal) pain in the ass, but there are ways to adapt to it and live a fulfilling life. My son was small in school; when he was a freshman in high school he was 5'1" and weighed 100 lbs, and he didn't have Crohn's. He just had to learn to be comfortable with who he was. I have severe eating limitations and cannot drink alcohol; that's just how life is for me. I find other ways to enjoy myself.
And at 15 you really shouldnt' be drinking anyway; it's not good for your brain development and it's also illegal. My son went to parties with his friends but was not allowed to drink; he still had fun anyway.
I'm glad to see that you reached out even though you are struggling and having the thoughts you are having. Please also reach out to your parents and share these feelings with them. Don't wait until you are so overwhelmed that you hurt yourself and your family. There is a bright future ahead of you - ask for help and find the right path for you.

 

[ColorsofHeaven]

I understand, it's not easy. I was 17 almost 18 when I was diagnosed. At first I denied it. Although it was hard when all I could do was sleep. I had three alcerations and was bleeding internally and thats how we found out I had it. Before I thought I was just lazy due to me wanting to lie on the couch all the time and because my family would say that I was (because I used to be so active so they thought it was me deciding to just be that way). I used to play tons of sports I was first in track (I loved to run), basketball, and volleyball. They put me on Pantasa after my flare up it got me to heal, but I realized I felt sicker on it. SO I stopped taking my medication and only took it if I felt a flare up coming on. It worked well for me. Ive had it for 10 years now and didn't have a single flare up until recently due to my second pregnancy though. Sometimes you just have to push yourself and ignore the rules. I just avoid certain foods like coffee corn and peanut butter and I tend to be able to do most things. I still like to run and I know you'll get there too. Just get through this flare up. You can still drink if you do it sparingly, but I found I much healthier and can do more when I dont. So I don't anymore, but I had my fun.