• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

When I found out

Kirsten

Kirsten

Location
Pennsylvania
When I found that I had crohns I was crushed because i have never had it easy and I been really lonely most people don't understand I struggle in school and life right now I'm trying to stay positive but it's hard the people closest to me try to help and support me just really hard being a teen with a chronic illness
 
M

mwkwmn

Location
Kentucky
My daughter went through that she was 17 when she was diagnosed with UC and she took it very hard. They put her on prednisone anis she had the moon face when taking senior pictures she was not a happy camper. She eventually got off steroids and is now taking humira and is in college and doing well. Hang in there there are better days ahead don't let it get you down.
 
Kirsten

Kirsten

Location
Pennsylvania
It's nice to know I'm not alone just hard being from a small town and being so far behind in school and not being able to be how I was before
 
M

mwkwmn

Location
Kentucky
Learn to pace yourself and remember take care of yourself that is most important. You are definitely not alone and you can talk to us anytime.
 
M

mwkwmn

Location
Kentucky
That's all you can do I have had crohns for 20 years and lost t18 inches of my small intestine. I am 48 and no that's not old lol and I still do things I want to do but I have to be aware of things. You will learn to adjust and with the new technology who knows they may discover a cure for this disease. Try to learn the foods that bother you and stay away from them and eat healthy and exercise to stay as healthy as possible. You have support here anytime you can text me or pm me anytime I'll help you all I can.
 
mccindy

mccindy

Location
Minnesota
Hi Kirsten,
I know it can be very frustrating to be a teen and have to deal with something like this. All you want to do is be normal and do what everyone else is doing but you can't. I'm glad to see you reaching out on this forum rather than closing yourself in. It's important to keep living your life as much as you can. We all go through times when we just want to shut ourselves in away from the world. As someone who has dealt with chronic pain most of my life, I can tell you it has always been the most rewarding for me when I've pushed through the pain, gotten out there and had fun! Knowing you did it despite your limitations will make it even more rewarding, and you'll realize how strong you really are. Talk to your very good friends about it - I think you'll find they are more understanding than you think, and will want to help and support you.
 
Clare Lack

Clare Lack

Dear Kirsten, so sorry to hear your story but I totally understand. My daughter is 16 years old and had crohns since the age of 10. She has had several flares over the past few years and tried every medication going. On and off steriods which bloated her face, had boys are school bullying her about her weight gain. This year has been very hard as she is studying for her GCSE's and has hardly been in school due to being in and out of hospital. Her school have been fantastic. They send homework home and online work for her. If u need to talk please feel free. You really need people around you who understands the illness and can give u big cuddles when you are feeling down. Tis hard going at times but hope you get some rest bite xx
 
alex_chris

alex_chris

Hey Kirsten,

I know it sucks. i was diagnosed at 18. But unlike you, I tried to ignore it for quite some time. At least you don't ignore it, but face it. That's a big step towards managing it long term.

Are you on some form of long term treatment? How are you generally doing?

Cheers,
A
 
Kirsten

Kirsten

Location
Pennsylvania
Thank you all for the support its really helping people around just don't get it I have always been different and had other disabilities and now people think my crohns is damaged me which really hurts me to know that's what people think
 
mccindy

mccindy

Location
Minnesota
People always think that there is something abnormal when someone has a medical condition. In my life I've found that there are more people that have some medical condition than people that don't! If everybody stopped being ashamed and just accepted each other, and understood that a medical condition is just a part of who people are, we would all be a lot happier. Certainly Crohn's can cause you to make lifestyle changes, but it doesn't change who you are.
 
mccindy

mccindy

Location
Minnesota
How is your family with the whole situation? Do you get a lot of support from them? That can really make a difference. If they are supportive, don't be afraid to open up with your fears and pain. It always helps to have someone who is behind you! We are as well of course.
 
Kirsten

Kirsten

Location
Pennsylvania
My mom is supportive my boyfriend been really stepping up with wanting to know about it and my best friend really proved how close we are I am lucky to have a good support system I just been really out of control emotionally
 
mccindy

mccindy

Location
Minnesota
I'm glad to hear the people around you are so supportive! But I do understand, they don't really understand what you are going through and the emotions can be just out of control. It's good you found this forum, I've already gotten a lot of help from the other people on here because you really can ask any question and not have to worry about being embarassed. It's so nice to talk to people who have experienced a lot of the same things and can really help. And it can take some of the burden off of you, from trying to "go it alone".
 
Kirsten

Kirsten

Location
Pennsylvania
Yea I was getting really upset being a teen with a chronic illness is HARD and stressful cause of school which is a real struggle I'm up to almost 20 days of missing which puts me behind
 
mccindy

mccindy

Location
Minnesota
I can understand, that would be very frustrating. Is the school working with you to help you catch up? Are you able to do any of the work online, or do they send it home for you?
 
Kirsten

Kirsten

Location
Pennsylvania
I go to one of the smallest schools ever they never had a student with what I have so they are trying but it's hard cause I go to two different schools in one day so I can take a child care class then all my major subjects so its like missing twice the work which is hard
 
mccindy

mccindy

Location
Minnesota
Oh, I see. Yes, that would be frustrating. I'm glad to hear that they are at least trying to help you. Hang in there, I know it's tough! Keep plugging away at it. I had to delay my high school graduation (although that was for different reasons). It seemed like the worst thing in the world at the time. Keep on trying and we'll help you all we can. :)
 
Kirsten

Kirsten

Location
Pennsylvania
I went to school half day today and I was doing really good but I had a bad night last night and a bad day today so hoping I will feel some what ok for tomorrow
 
furiousfunker

furiousfunker

Hey Kirsten, as everyone has said, you're never alone on here, we all know what it's like and how horrible this disease can be but now you've been diagnosed, you can now begin getting better and back to your old life, pain free :)

As for everyone else, you quickly realise when people genuinely care and when people don't want to know, just ignore the second type and the genuine ones will take the time to learn about Crohns and support you
 
mccindy

mccindy

Location
Minnesota
The great thing, Kirsten, is we find out how strong we really are when we go through these types of things. No one can "go it alone" but together we can do anything! When new challenges come up just remember, you made it through each of the last ones and you can make it through the new one too.
 
M

mwkwmn

Location
Kentucky
These days what is normal. Do not give in to your illness, you can do and make anything of your life you just have an obstacle you have to deal with. You'll be surprised as to how strong you are and what you are capable of doing. Accept the challenge and make your life what you want. You have all of us to support you and we will but most important believe in yourself and don't let this disease stop you from your dreams.
 
M

mwkwmn

Location
Kentucky
You have to take a leap of faith what have you got to lose. If you try your hardest you've done your part if you don't try you'll never know what you can accomplish. Your young and you have the chance to do anything you want. Take it from an old man lol start believing in yourself and take the chance.
 
M

mwkwmn

Location
Kentucky
I've had crohns for 20 years I started my own companies and was successful but recently I found out my brother and wife were having an affair for 3 years so I'm getting divorced my business partner did a hostile takeover of the company the bank is foreclosing on my house and I still get up everyday trying to make the best of it. You have to fight and fight hard because nobody is going to give anything to you. Believe in yourself and good things will happen. You just can't give up.
 
mccindy

mccindy

Location
Minnesota
Kirsten, try to find the positives about your life to help you get through each day. You have a family, boyfriend and friends who love you and support you. You have the use of your legs and can get around by yourself. While things are really tough for you right now (and there's no doubt that they are) there's always worse! Keep fighting and connecting and you'll get through it.
 
M

mwkwmn

Location
Kentucky
I understand how you feel remember your stronger than you think. You will have rough days and good days. People in general take for granted there health we however look forward to the good days and are thankful. I'm sorry your having a tough time now but you will have good times you just have to not let it get to you. Easier said than done I know. I wish you all the luck and that you get to feeling better soon.
 
MEGANSMOM

MEGANSMOM

Kirsten said:
When I found that I had crohns I was crushed because i have never had it easy and I been really lonely most people don't understand I struggle in school and life right now I'm trying to stay positive but it's hard the people closest to me try to help and support me just really hard being a teen with a chronic illness
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my daughter is fourteen and has Crohn's disease. the more you talk about how you feel will help you. megan did not talk about at first but has learned it helps her to know there are other teenagers that go thru what she does. megans humira is working well so her tummy feels alot better but know she is having chronic back pain. so we are trying to get that under control. all i can tell you is talking to others that know what u ging thru will help. megan is home from school today due to pain.........maybe you and megan could talk and might make yall both feel better......sometimes that helps i am praying for you honey.
 
alex_chris

alex_chris

Kirsten said:
I have the support but dealing with this is hard cause of the pain and weird side effects
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Kirsten, just one thing from my side: you can stay pain free and live without any symptoms or problems eventually, but that takes the will to do so, good Crohn's management and definitely also a good outlook when it comes to life. Plus, not taking everything in the world too seriously so you don't end up too stressed out.

I know this is all easier said than done and I remember when I was diagnosed when I was 18 I very often was also just frustrated. I also thought pain, cramps, reoccuring problems every few weeks or even more often was just the way it is. Well, it doesn't have to.

Plus, I am happy that I still stuck woth studying hard, school and university. So, when some people say you are missing too much classes in schools, they actually mean well, even if you very often feel unwell and that is the reason you want to head home.
 
alex_chris

alex_chris

Kirsten said:
I can't stand up straight sometimes and they still kept me at school
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As I said above, of course first comes long term management. You probably have said it already, but on what drugs are you on? Do you eat regularly and adhere to a diet that you know is ok for you or are you often venture out of safe foods and eat stuff that you know you shouldn't? What's your stress level and are you worried a lot?

Also, have you looked on the forum to consider vitamin therapy and supplements to combat the most usual deficiency that comes with Crohn's?
 
Traumanurse

Traumanurse

Location
Colorado
Kirsten

I think we've all had times when we are actually at our wits end with the disease and wanted to just give up trying to make it better after trying so many things. The thing is, you can't! I think my tough times with the disease helped me figure out just how strong I was AFTER I got through it. You've got to buck through the worst of it knowing that you'll come out at the other end of things AND you'll have learned how strong you really are. Dig inside yourself and find that part of you that will see you through. I KNOW you can do it!
 
Kirsten

Kirsten

Location
Pennsylvania
I'm waiting to start remicade I eat but everything goes through me I can't even keep a steady weight my stress level pretty high cause of cd and school
 
alex_chris

alex_chris

Kirsten said:
I'm waiting to start remicade I eat but everything goes through me I can't even keep a steady weight my stress level pretty high cause of cd and school
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You'll see, with remicade your current inflammation might just go down significantly. Does you doc prescribe pred for the current, short term treatment of your inflammation? If not, I'd ask him.

Once you get your inflammation under control your diahrrea will also get better.

As to stress levels, I know it's easier said but done, but just take one step after the other and try not to worry and stress out too much. And when you see the first effects of the medicaton helping you, you might as a next step try to figure out what foods are good for you and what not (you probAbly know the drill, everything "too" is bad, too oily, too spicy, too sour, too sweet, too salty, too burned etc.). Lastly, at some point when you are feeling better I really recommend regular sport and also things like yoga. It really, really helps with stress and just generally improves your health.

All the best to you!
A
 
Kirsten

Kirsten

Location
Pennsylvania
I'm working on finishing my pred in June so we will see and I hope I could pick
Up running and walking I used to do that before when I was stressed but I can't do that now
 
staloffn

staloffn

Traumanurse said:
Kirsten

I think we've all had times when we are actually at our wits end with the disease and wanted to just give up trying to make it better after trying so many things. The thing is, you can't! I think my tough times with the disease helped me figure out just how strong I was AFTER I got through it. You've got to buck through the worst of it knowing that you'll come out at the other end of things AND you'll have learned how strong you really are. Dig inside yourself and find that part of you that will see you through. I KNOW you can do it!
Click to expand...
I would agree. it might not be the best way to find out just how tough you are but the group on this forum certainly are some of the toughest out there. the things we go though, the pain we deal with. it does test you at times but after you make it though a bad stretch... you come out a bit stronger. i know for myself it has almost allowed me to appreciate things in a new way that most do not. when things get under control don't forget the bad times cause it will help you to really enjoy the good ones.
 
Kirsten

Kirsten

Location
Pennsylvania
Update I'm doing a lot better since started remicade starting to go back to normal somewhat eventually I will post a more detailed update thanks for all the support guys and we keep fighting crohns together
 
mccindy

mccindy

Location
Minnesota
Kirsten,
I'm so glad to hear that you are doing better! Sounds like the Remicade is really helping you. I knew if you toughed it out things would improve for you. Enjoy the summer and I hope things stay great!
 
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