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Just need support


Tue, September 30, 2008 12:42 PM

My daughter was diagnosised with Crohn's at the age of 10.  She is now 20.  We have gone through 2 surgerys, different medications and on I can go.  She is in college now and she is not taking care of herself.  I try to talk to her and she will not listen to me.  She wants to be like everyone esle.  She is partying, eating things that she knows will cause her pain .  I'm not sure what to do.  I'm angry at her because she does this stuff and then expects mom to try and fix it.  I've suggested that she talk to someone about the anger and to get online and talk with others who deal with the same problem.  Does anyone have any suggestions on what I should do?

FPO arlene2
Joined Sep 30, 2008

Sat, November 22, 2008 1:00 AM

 Reply posted for Smiles277.

I am 34 years old and constantly eating things that aren't good for me like sugar, fast food, ice cream, the list goes on.  And then I don't feel good and blame myself.  When I feel good I eat that stuff and it causes me to not feel well.  It's a vicious cycle and I am trying to get off of it, so I understand completely what you're going through.

FPO marcie
Joined Oct 30, 2008

Sun, November 02, 2008 12:00 AM

 Reply posted for arlene2.

My name is Adam and I've been your basic Crohn's patient the last 18 years, stoma and all. It is actually my first time on this website and I've never attended so much as a support group. 

I felt compelled to reply to help shed maybe just a little light on why your daughter is acting this way and if you can't help her, you might understand a little more.

I think most are born into this world with a real sense that we are indestructable. I have lived with the disease and I have always had this feeling to "beat the clock".  My time on this earth, I thought, was limited.  We are all, but I thought myself more so.  I've never been afraid of dying neccesarily but I am petrified of not LIVING.  Now I'm not saying we should do things that are inherently bad for us but we've all got to live.  When you have been sick and "missed" parts of your life you want to savor every second. Good and bad.  Every second, hour, day, week, month, year, holiday, and birthday we miss I think puts a pressure not to miss anymore.  It sounds to me like your daughter is immersing herself in living and trying to be "normal".  Funny thing is, we never really are, but we're gonna try.  She's in college doing everything that everyone else is doing.

My advice to you mom is to probably keep doing what you're doing.  Try to steer her in the "right" direction and if she doesn't eat well, or sleep, and maybe she drinks a little, try to understand why.  She's probably scared, like I was-and am- that one day whether it's at 30 or 100, I WILL NOT look back on my life and say I wish I had lived-because I have.  Just love her and support her. Good luck to you and I hope maybe I've helped at least a little in understanding why she is where she is. 

Adam Crabtree

FPO cradam
Joined Nov 2, 2008

Sat, October 25, 2008 10:03 PM

 Reply posted for arlene2.

Im so sorry!!!

I hate to say it but even at 28 i am still pushing the limits with what i should and shouldn't do.  Being limited at a young age can drive a person totalllllllly nuts, and make you do things that you know are going to cause you to cry in pain. My dr tells me not to eat raw veggies but i can NOT help it but eat salads!! My mom yells at me when i tell her i had a bad tummy day and i admit i did something...

College is hard enough as it is... but adding this ontop of it must be hard!! Try explaining to roommates why your always in the bathroom or why your doubled over in pain more times during the week then running around on campus having fun or explaining why your missing the best party of the semester that you and your friends have been planning and getting ready for the whole week... Yes, these things may seem simple and non important compaired to her health but the one thing i live for is to be & feel normal to not have to explain why im sick or that i even am sick... there was a time i did exactly what she is doing and i drove my mom crazy but its a phase and she needs to feel that she is living her life not her sickness running her life.
 Nothing anyone says will make you feel better about this, because as a mom it is your job to worry and regardless what she says she is listening to you and agrees with you BUT she wants to be the one to decide when to grow up... and do what is right. Its scary being sick and we all fight back in different ways!!

Keep your head up!!! I owe my life and my healthy smiles to my Mom who held my hand when i needed, sat in the hospital, called me daily to see how i am, and just loved me even when i was not making the best choices...

FPO smiles277
Joined Oct 25, 2008

Sat, October 11, 2008 12:00 AM

 Reply posted for IBDaMom.

My 14 dd was just diagnosed with ulcerative colitis.  I'm grateful that this is the 1st time with 3 kids that we've dealt with chronic illness.  I'm also totally overwhelmed and thunderstruck.

This is my 1st experience with not being able to offer comfort and cure to my children.  It's been difficult being scared and confused together through transfusions and er visits and our 1st hospital admission.

It's her body, her diagnoses, her suffering ... in the end all I can control is how much I love her, how much I model striving for wellness, how much I support her ability to take charge of this new challenge.

FPO kristinlauri
Joined Oct 11, 2008

Sun, October 05, 2008 9:10 PM

 Reply posted for arlene2.

Hi,

As a parent of two children, 15 and 9 I can know the love you have for your kids. I was diagnosed with crohns when i was a junior in highschool. I too wanted my independence and to live a normal life. I didn't understand the disease and how to take care of myself. I went to college and did all that your child is now doing. After my third semester I found myself in the hospital with a perforated intestine. They called my parents in 5 times to "tell me goodbye" I am now 42. I can tell you I did learn to accept my life. Life can be great. Life can stink. I am married with two children, have a great job, own my own home, one dog and a cat. For the last 24 I have been hospitalized too  many times to count. More x-rays, cat scans, etc than the law should allow. I should be glowing. Over 100 outpatient "things", etc. Through it all, with the grace of God, I  have a great life. Try to be patient, pray, and be there.

FPO thomastrigo
Joined Oct 7, 2008

Fri, October 03, 2008 12:00 AM

 Reply posted for IBDaMom.

        This might hurt you..... LET HER BE......... she'll learn a hard lesson ... and grow up more... then ALL WILL BE WELL.....

FPO geanie
Joined Mar 17, 2008

Wed, October 01, 2008 10:10 PM

 Reply posted for arlene2.

I'm sorry you are experiencing such a helpless feeling.  It must test your patience terribly.  As a mother of a ten year old daughter now, I worry about the challenges she will face through young adulthood.  Right now, she looks to me for comfort and reasurrance.  Based on the difficult course your daughter has had, at some point you realize and she must realize that you can't 'make it all better.' But, she knows you will always be there when she really needs you.  If I may ask, what advice do you have for me, having gone before me, to prepare her for eventual independence?   

Thank you. 

FPO ibdamom
Joined Jul 4, 2008

Wed, October 01, 2008 7:07 PM

 Reply posted for arlene2.

I was diagnosed when I was 14 and am now 20. It's only been within the last year that I've really accepted the disease and come to be ok with it and with myself.
I was lucky enough to go into remission for a few years after diagnosis, until halfway through my first semester at college when I started flaring. I was enjoying the freedom of college and started pushing the boundaries of what I ate and when I went out. I was in serious denial about my health. I completely ignored my symptoms when they came back. A few months later I found myself in the hospital with a really severe flare and a blood clot as a complication.  It was a real low point in my life-I had to take the semester off from school and went from being completely independent to being almost completely dependent on my parents. You would think that would have been a wake up call for me, but a few month later I got better and was determined to get back up and live life to the fullest. It took another flare-basically a repeat of the first one to get me to wake up. It's the angriest my parents have ever been at me by far.  My parents were there for me and helped me get my strength back after I was sick, but after the second flare they told me that if the same thing happened again, they wouldn't help me pay for school anymore.  I finally realized that if I didn't take care of myself, I would never get to live the life that I wanted.  I still go out and have fun, but I know now that I have to listen to my body.
I never liked when my parents tried to talk to me about my disease, as I spent most of my time trying to ignore the fact that I had one. Sites like this one though have really helped me to see that I'm not alone. There's also a facebook group that I connected with first because it's all young people dealing with the same things I was. I also liked it because it's facebook, so its something that I'm used to looking at-normal people get on facebook, so I didn't feel weird looking at it.

FPO woahitslibby
Joined Jan 10, 2009

Wed, October 01, 2008 1:05 PM

 Reply posted for arlene2.

I agree.  I was diagnosed with UC when I was 18 and living in the dorms at the time.  It wasn't easy going from no meds at all to feeling like a walking pharmacy!  Especially when one of the meds was an enema that I had to give myself every night.

Hang in there.  It may take your daughter time in order to accept what she has. 

Take care.

FPO lisap
Joined Jun 16, 2008

Wed, October 01, 2008 12:00 AM

 Reply posted for kawaiir.

Thank you.  I know what you are saying is true.  As a mom, you want to fix things.  I am going to try to get her on the site.

May God Bless you.

FPO arlene2
Joined Sep 30, 2008

Tue, September 30, 2008 9:57 PM

 Reply posted for arlene2.

Hi and welcome.  I know it must seem like you are helpless, but the truth is, there is nothing you can do but be there.  I was diagnosed when I was 21 and all I wanted to do was be normal.  I know it is hard but it sounds like she will have to learn the hard way.  Until she realizes that her situation is not "normal" she will push the boundaries.

I know from the outside looking in, you must be thinking how she could be so careless with all she has been through.  You would think she would do all she could to keep things in line, but it is just not that easy.

I used to think, "why should I eat right and take all of these meds and try so hard to "do right" and I am still sick.  I thought "well, if I am going to be sick, I may as well have fun and eat what I want and do what I want. She could be dealing with those same issues.  Just try to get her on the site, she may be open to that so she is not really talking to anyone, just reading and even if she does not connect to anyone on the boards, just knowing that she is not alone, may help her.  She may even read some things that may "scare her straight"

FPO kawaiir
Joined Sep 25, 2008

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