17. just diagnosed. kinda pissed. really scared

[kathleenmayb]

i have had stomach problems my whole life. i was always the girl who had to get picked up from the birthday party because she had a stomach ache. i was also a national gymnast for ten years until i quit last year because of my health. i was vomiting 20 times a day and losing a lot of weight. i was in the hospital for a week and they couldn't find a single thing wrong with me they did a barium test, x rays, endoscopies, you name it. i ended up quitting gymnastics because my health was so bad. this year at the beginning of grade 12 i got sick again. this time, i was having extremely bloody diareha about 10 times during the day and 10 times during the night. and again i was admitted to the hospital for 2 weeks this time and they did a colonoscopy and they found crohns disease. I'm now on prednisone and weaning off and going to start remicade soon as soon as the insurance is sorted out.
i feel terribly alone in all of this with no one to talk to about it. as much as people claim to understand what your going through; they don't. NO ONE knows what its like. I'm scared about complications and surgery and how this is going to affect the rest of my life. my life was perfect. i was a happy, carefree, 17 year old girl. i was happy. and now i just feel like the rest of my life I'm going to have to deal with this crap and no one is going to understand. i don't even feel like i have the right to complain about my situation because i know there are SOOOO many people out there who have much worse luck than me. I'm not dying and i still have my whole life ahead of me so really i have no right to complain. i don't know. I'm really confused and i envy every single one of my friends right now for not having crohns. I'm so unbelievably jealous i could just scream at them every time they complain about their life.
anyways, thank you to anyone who took the time to read this! it feels good to rant and here what people who know what I'm going through have to say. please reply!!! <3 u all

 

[Del]

Hello Kathleen and welcome to this great place to hang out now and then..
Really sorry to hear and read your story... You do have a right to vent because everything is relative. This is a horrible disease and can be debilitating.

The meds hopefully will help you to get some part of your life back and then you can get back to things you have enjoyed in the past.
This forum has helped me immensely since I have been diagnosed recently Kathleen and they really are a great bunch here...who have been through so much...

Stay in touch and talk soon..

 

[DustyKat]

Hi Kathleen and :welcome:

First up...(((HUGS)))...:hug:

I'm sorry you having to go through this at your age. I don't have Crohn's but both of my children do and I know they have had the same feelings, frustrations and disappointments that you have. I know you know there are people worse off than you but it doesn't make it any easier does it? You have every right to feel the way you do hun, don't deny yourself those feelings because it is normal and natural, it is a process and it will get better. You won't always feel like this, honest you won't!

Both of my children have had complications and surgery and both are now in remission and powering ahead. My daughter is away at university and living life to the full and my son, more recently diagnosed, is now finding his feet and going from strength to strength. I know it is hard to see light at the end of the tunnel when you are new to this but it does get better and you will achieve, there may be detours along the way but you will get there!

You have found a fab place here for info and support and will find loads and loads of people that know exactly what you are going through. Have you good look around the forums and make yourself at home.

There are quite a few teens on here and there is also a teen forum...

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

It is password protected so if you wish to have a look in there just PM me.

Good luck and welcome aboard!

Dusty. xxx

 

[ladyrose]

Hi, welcome to the forum.

First, I'm so sorry about your diagnosis but I think you've found a good place for support. I'm new here, too, and I've found some valuable information on this forum. Secondly, I partly understand where you're coming from. I'm diagnosed at 22 years old and it is very difficult to watch your friends do things you can no longer do. It's totally okay to feel angry and frustrated about this disease because it IS frustrating and angering!

Hopefully the medications will help you regain a sense of normalcy. You have your entire life ahead of you and it will get better from here on out; having a diagnosis is the start to it.

 

[chrisnsteph1022]

Welcome! I'm so sorry you're dealing with this as a teen. Being a teen is hard enough. I'm grateful mine didn't show up until I was 23. I had NO symptoms prior to that. Even at that age, I dealt with anger and depression. It's perfectly normal. Just know when to ask for help. Therapy, anti-depressants, etc.

 

[vickyhunter]

I'm 19 and have had crohn's for 12 years so I know exactly what you're feeling right now. I hate the fact that I have to live with an illness while others don't - it's just plain unfair!
But on the other hand, I appreciate things a lot more than them, like when I feel well, so when they moan about stupid stuff I just feel sorry for them that they don't have better things to worry about, but glad at the same time that they don't because I wouldn't wish an illness on anyone.
I know it's hard but try to stay positive, and remember you're not alone!
xxxxxxxx

 

[Mountaingem]

Welcome Kathleen! I was in the same situation at your age-vomitting and diarrhea all day and night, yet all of the tests would come back negative. People would laugh at how skinny I was and say I was bulimic-which I don't get how that's funny but people can be mean. I was diagnosed at 19 after I passed out bleeding at work in the bathroom.

I am now 39 and still often feel irritated when my healthy friends b**** about their lives. I wish the worst I had to deal with was working full time or children being difficult. So I mostly try to focus on being grateful for the good things, although sometimes I've gotta dig deep for it. At least the drugs even though are a bit scary are MUCH more effective than when I was diagnosed. And since you're starting out on Remicade, things will be much better.

I'm really glad you found use, please don't hesitate to vent anytime you want or ask any question, no matter how weird or gross you might think it is-everyone here is super supportive and we'll all see you through this

 

[Emily]

:hug: Kathleen, nobody can relate like we can. Same kinda thing happened to me and I got really depressed about not going off to college, I felt really lame to not be able to go out and have fun. But this will pass! First of all, this forum has a bunch of people our age who can relate to what you are going through. Second of all, there is no way you should feel bad for complaining, you should see my first post on this forum, I complained my heart out. You deserve to complain. Most importantly, we are really lucky and there are some great treatments out there, now you just have to find the right one for you, and you will be off enjoying life and going to college and doing normal stuff with your friends and everything. We're here to get you through it!

 

[Ducey99]

Hey Kathleen,
I have a similar story too. I was diagnosed at 12 but had my first real flare at 18, my first year in university, then another bad one this summer. Just not being able to be normal and go out and drink and enjoy yourself is almost as bad as the physical aspect of Crohn's. I haven't really partied in like 6 months, not normal for a 23 yr old.
Some positive insights for you though.. when i'm not flaring, it's almost like I don't have this illness. In between my two major flares the extent to which Crohn's affected my life was the few hours of Remicade infusions every 8 weeks. I was playing sports, eating and drinking whatever I wanted. I'd get the occasional upset stomach, but who doesn't. I'm not 100% right now but i'm confident i'll get back there in short order. I hope you get to start the Remicade soon and find it as awesome as I did.
You'll have your bad days with Crohn's for sure, but you won't feel this bad all the time. Now that you're diagnosed and will be getting treatment, things will start to get better and better. 20 trips to the bathroom a day, everyday, isn't what's in store. Other peoples complaints about the dumbest shit will probably always piss you off though haha.. guess it kinda makes you aware of how good some people here have it.

Man I ramble.. Anyway, best of luck
Michael

 

[kathleenmayb]

WOW thank you everyone so much!!! you guys are right this forum is a really great place, everyone here is so supportive. i know it will get better i just have to wait it out and stay positive. i keep telling myself that everyone has sh** in their life. (be it family problems, or financial or emotional .... or their health... ) and everyone just needs to get over the bad stuff and focus on the good stuff. nobodies life is perfect, (even though i claim my life before crohns was, it wasn't) and its the imperfections that make you feel so much luckier to have the good things. I've got a lot of good things in my life, and I've just added this crohns forum to the list.
THANKS EVERYONE <3 <3 <3

also, i was wondering if anyone finds that their symptoms get worse or if they get any sort of flare up when their stress levels increase. i notice a definite relationship between my stress levels and the quality of my health. i was wondering if anyone could relate? let me know!

 

[Mountaingem]

Ys, I'm sure everyone here would agree that stress defintely makes your Crohn's symptoms worse. I had a doctor once tell me that unless I could get my stress under control, no medicine he gave me would be effective.

 

[pain in the butt 2]

:welcome:welcome

 

[Jim (POPS)]

Don't be scard, It's not as bad as you think. Just stay pro-active with your Doctors. Only you have control your of mind and know one can take that from you, and having a possative mine will go a long way when you have crohn's. (I too just found out that I have it, and after my first meds it's under control) BUT my wife has had it for over 30 years so I know a little about a lifetime with crohn's. She has had some opperations, yes but today she is 56 (don't tell her I said that lol) and she is doing great. Very active. She got it at a young age as well and we have been together for over 39 years. Flairs come and go and my wife says she always has a longer time between flairs when she has a positive out look. Calm down, find out all you can about it and live in the moument and don't feed your fears. You'll be just fine. I've had it over 15+ years with 6-8 BM a day, cramps and all that stuff and never went to the Dr. untill I loss 20lbs in 1 year. I'm being calm because of my wife's experance. I hope this helped. POPS

 

[Del]

One of the benefits of my been diagnosed with CD recently.....is that things I use to get stressed about (and there were lots) I don,t even consider any more. De-stressing has been a big bonus for me now. I now clearly see that life is quite short and attempt to enjoy it more
I was even making a phone call the other day and I was asked to go on hold!!! I actually told the girl life was short and i had no time to go on hold...I gave her my number and they phoned me back...Never would have done that before....would have just got stressed out waiting...
Take care..

 

[Porkpie84]

Welcome Kathleen,

Just want to say that the way your feeling is completely normal. I think whenever we lose something we grieve, and a natural response is to feel scared, lonely and angry. I say this because I too was only diagnosed this year after being operated on to remove an abscess from my small bowel. I remember being so shocked when I got the diagnosis of Crohn's. I couldn't believe that I suddenly had this condition for life as I felt like a healthy person until 2 weeks before the admission to hospital. I too grieved for the way things used to be. I was scared of change and of having to make difficult decisions regarding treatments etc. The only difference for me was that I wasnt having any symptoms apart from bloating and I think that made the diagnosis a complete surprise. For you, due to all the health problems you've had, this diagnosis is a positive thing. I know it may not seem that way but now you'll get the best care and employers and friends will be able to understand why somedays just getting by can be a struggle for you.

I know from personal experience, and reading stories on this forum, that Crohn's can also have a positive impact on your life. Like many have said you'll appreciate the good times more than most. Too many people worry about things that don't really matter. But even at the young age of 17 you'll eventually have a strength and outlook that others admire Your journey will have its ups and downs but nothing is a given in life for anyone. You have to allow yourself to feel what you feel but also tell yourself that everything will be ok in the end. You may grieve for things you believe you have lost but you will still have everything you want and more Others are proof of this. They live happy active successful lives and Crohn's doesnt define them.

Your doing brilliantly so give yourself a pat on the back. Come here and vent whenever you need too. PM me if you ever need a chat chickadee


Sorry for the long message but I saw your post and my heart went out to you. I remember the same feelings you had but I was 26 and I can imagine being 17 makes it even harder.

Hugs,

Becky x

 

[tishbite]

Your story sounds similar to mine. Got mine when I was 16 and ended up dropping out of highschool. Things will get better hopefully. Remicade did wonders for me for a few years. Good luck dove.