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My daughter was diagnosed in June with CD. Has been on Entocort since that time. We tried to come down on the dose and her Sed rate went back up. Doctor wanted to start her on Imuran, daughter refused, due to possible side effects. She said she would try Pentassa instead, doctor wasn't really happy with her decision, but said okay,  now she won't take that. She doesn't take her iron like she is suppose now either. At first she did very well, now she is not wanting to take anything. I am in the medical profession ,and a mom, so I am starting to get very frustrate and scared. She is 17, and is a really good kid. Follows the rules, does very well in school, but all of a sudden doesn't want to do what she needs to do. I can't hold her down and make her take it. I am trying to deal with her on an adult level so I don't look like I am nagging all the time, even though I know she feels like that is all I do. I think this is denial, but then she will talk about her disease. I wake up every morning and this is the first thing that comes to my mind. I am trying not to let it take over my life or my family's life, but it is hard. I am scared for her, because I do see the things that can happen if it goes untreated. Sometimes knowing too much is not good.  Sorry for rambling on. Has anyone else had a problem with their teen not wanting to be compliant? Any suggestions or just hope she comes to her senses?

 Reply posted for Terry5116.

Hi,

I have a 14 yo with CD.  You are wise to give your daughter as much control over her meds as possible and (like another poster said) ask about symptoms as little as possible.  It helped to shift the focus from what my husband and I were "making" our son do to what he needed to do for himself to feel well, play sports again, etc.  It was easier once meds worked and he could see the difference in how he felt--then they want to be compliant for themselves.

I am in health care and I know the complications of undertreated disease too.  And my son had pretty significant disease.  But this takes time.  You are building an attitude that will carry her through when you are not around to bring her to GI appointments, right?

good luck

 Reply posted for Terry5116.

Terry,
Your response really hit home with me. Although my 24 year son hasn't had the definitive diagnosis yet, his serum markers are indicating IBD. I am a mess because my mom has had an ileostomy from UC. When I try to say anything, he gets snippy, and says, "are you a doctor?". This is from a kid who had always been an even tempered, happy person ( on the outside, I guess). I guess I need to let it go and let him handle it, since he is an adult. It IS hard, though. A mother never stops worrying, even when her kids grow up.

i have a 16 yr old who has crohn's disease and i am also in the health profession! how funny is that!...i feel your pain on knowing too much and the difficulty of compliance. i think your daughter might benefit from talking to someone who has the disease and is her age. someone she can relate to.

 Reply posted for Terry5116.

My daughter is 10 now and of course I think about the teen struggles.  I made a decision early on that Crohns is her responsiblity.  I am a nurse also and I know myself well enough that I could easily drive myself crazy with worry and fear for her wellbeing.  I made it clear that I will be Mom the go to person when she is having a tough time, but I wouldnt be Mom the food or medication police.  She let me know early on that she doesnt want me to overwhelm her with medical facts.  I obtained brochures from CCFA and left them where she could find them.  She ignored them for quite a while, but then started reading them when she was ready.  I had to restrain myself from asking her daily about her bowels.  I just tell her to let me know if there is a change (blood, increased frequency, pain, etc.).  I keep a log of all complaints to help her see any patterns and the relationship between food, skipped meds and her disease activity. 

You daughter sounds like a very bright girl. This is an overwhelming change in her life. Even if she was the perfect IBD patient, there is no guarantee she won't have problems. She will stumble, but I think you would be wise to give her space to deal with this in her own way. She knows you care very much. As much as she would like to ignore it, she ultimately will not be able to.  At worst, it may take a trip or two to the hospital.  All you can do is tell her yes, IBD  really sucks, but you will always be there if she needs you.  God Bless you. 

 Reply posted for Terry5116.

I don't have a teen yet, but this is so scary and worrisome. It is so hard to get the kids to do what they need to do and you are right you can't force her, but maybe you could get an appt with a therapist or the GI's nurse to find out why she doesn't want to comply.

What about the boards her- looking at the teen section. Let her know she is not alone and that others suffer just like her.

I can only imagine your despair about her rebellion. I at least can bribe my daughter to sit at the computer while I give her meds. It is a struggle but you are right, she has to want to help herself. They must have a nurse or someone she can talk to about her feelings about have IBD and what it means for her life.

I guess I have nothing helpful to say except I really empathize with you and hope you can turn it around. So sorry you have to deal with this too