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My 14 year old daughter was diagnosed May 2012 with ulcerative colitis and I'm nearing the point of desperation in trying to help her.  She has always been a very private person and I've always had to pry just about everything out of her.  As we sat in the doctor's office today enduring what feels like interrogation, I couldn't help feeling like a bad mom.  When my daughter won't answer the questions about pain and all the other typical questions the doctor looks at me and I don't have the answers because she never tells me anything and if I ask, she gets upset and clams up.  She also refuses to take her medicine and when I remind her or ask her about it, she gets very upset. It has caused a lot of friction in our relationship.  Does anyone have a similar situation?  I've told her I can't help her if she won't talk to me.. She got chewed out by the doctor today for not taking her meds and ended up in tears.  I  couldn't get her to talk about it at all and she's hardly said 2 words the whole day. Everyone is walking on egg shells.  She also refuses to talk to a counselor.  I think I'm going to have to force it.

 Reply posted for helpless mom.

So sorry that you and your family have to go through this. Do you go to a large GI practice/IBD center? If so, try to see a psychiatrist that has experience in cognitive behavioral therapy for IBD patients. It has been shown to be VERY effective in the pediatric IBD population. Also, look into getting her to go to camp oasis this summer and/or attending a support group, etc through CCFA. You can find the information for your local chapter on this site. Take care!!

 Reply posted for helpless mom.

I have a daughter she'll be 14 in Jan and was dx w/cd @4.  I think there are pluses and minuses about teen vs. adolescent dxs.  One sad thing is my daughter doesn't remember living w/o meds; however she never developed poor eating habits that many teens may not think twice about. Our pedi gi's office has a social worker on staff as well as a dietician - both have been priceless.   Sometimes we mom's simply anger them, they're teens, know everything they think)!   I've seen some children become hospitalized because they aren't taking meds, eating as subscribed, etc.  See if there is a support group in your area meeting other kids may really help her emotionally. My daughter didn't know anyone else until she went to Camp Oasis.  Now three of her best friends are fellow Chronies.  Her other cheer / middle school friends have no idea of her condition.   You are not alone in your struggle, we can all relate.                                                                 

 Reply posted for helpless mom.

Sounds like a classic case of denial--if she doesn't take the meds, the whole thing will go away. I suppose the best appeal is to her self-interest--that if she avoids her meds, the likelihood of her being in terrible pain and discomfort or requiring surgery will increase dramatically.

 Reply posted for kman484.

She is on Remicade and has no problem going in for the infusion, it's the other meds she doesn't want to take. I think when the doctor first mentioned Remicade my daughter thought that would replace the other meds but it doesn't.  After getting chewed out by the doctor yesterday she took her nightly dose but forgot this morning. She says she'll start taking them but I don't know how long that will last. I am, however scheduling an appointment for her to talk to a counselor. She will be angry with me for it but she's always angry with me anyway. My hope is that he can get her to accept the fact that she has this disease and that shutting people out isn't going to help her learn to deal with her it. 

 Reply posted for helpless mom.

I'm not a doctor, so I have no idea what meds would be appropriate for your daughter's case. But if she were on Remicade, she would not have the choice to avoid her drugs--she would have to go every 6 to 8 weeks to a facillity to get a two-hour IV drip--that's how the drug is administered. Your only concern at that point would be making sure she shows up for the drip. Aside from that, she wouldn't have to worry about taking meds--and you wouldn't have to worry about it either. You might ask your GI doc about this.

 Reply posted for grumpymama.

I know you're right, it's a hard thing to do knowing that she's so against it but I will schedule an appointment today. It will be a good thing in the long run. Thanks!

 Reply posted for helpless mom.

At this point I think you're going to have to force the counselor issue.  Explain to her that in order for the doctors to understand what's going on and HELP her, she HAS to talk to them.  Perhaps threatening to leave the room during the visit will do the trick.  That or it could be that she doesn't want to worry YOU and you leaving the room may help her open up to the doctor.