Community Forum

  My 9 year old son has been diagnosed with Crohn's for about 3 years now.  And I have always been very truthful with him about his disease and do not let him see me break down and hurt for him.  But this past year has been a very rough one for us.  His Crohn's which has been a difficult case went into a really bad flare this summer with a hospital stay and a second blood transfusion.  He has always been upbeat and positive and played whatever sport he wanted.  But this summer he tried to play football and had to quit because of no energy, now he is trying to play basketball but because of pain, diarrhea and vomiting he wants to quit this.  He is crying alot because he says the kids make him feel even more different than them, and it bothers him that he can't play and go like they can because of pain and energy.  He thinks all the kids at school hate him, which I have noticed that alot of his friends have started treating him differently.  I have contacted his GI to see if they can send him to someone to talk to.  And I think that if he could be in a group of kids that are going thru what he is, even if it was once a month would help.  But because of where we live I don't think there is anything like this close by.  But does anyone have any other suggestions?  He is starting to withdrawal from other kids and I am worried and hurting for him.      

 Reply posted for MARSHA.

It's heartbreaking to see your child going through this.  My daughter was 16 when diagnosed with UC 2 years ago.  She was a Junior in high school and felt the same way as your son.  She was saying she has no friends, etc.  They wouldn't call her and left her out.  She really grew up fast and really found out who her real friends were.  She's now thinking about majoring in Psychology because of this experience.  It's very hard for children.  Her first pediatric GI told us it's very common for kids to experience depression and he Rx meds for depression.  My friend's daughter was diagnosed with Crohn's the same time as my daughter she was 14 at the time.  She went to Camp Oasis (it's here in California) and LOVED it sooo much.  She has been there twice and my friend said this past summer when she picked her up, all the kids were crying because they didn't want to leave each other because they got so close at camp.   When she's older, she can be a camp couselor there too.  It's a great experience.  Her doctor at UCLA happened to be the doctor there that week which was great for her too.  Have you looked at this website at the "Kids and Teens" section?  There's a chat room for the kids they can go on and it's the Starlight one that the other post mentioned.  That may help him to look on that sight.  There are all kinds of things there.  Also, find out through ccfa where a monthly kids group for IBD is in your area.  My daughter looked into it and happened to go to an adult one by accident and she was very depressed afterward saying "am I going to be like that when I'm older" because some of the people had been through so much.  My daughter says I have no idea what she's going through at her age.  My heart breaks for her and all the kids.  Good luck and keep us posted.

 Reply posted for MARSHA.

Hi...my daughter just turned 12 and was diagnosed with Chron's this summer. The past 7 months have been a nightmare, but she is finally making progress on remicade. She has been very strong through  it all and has maintained her sense of humor. However, now that she is improving, she has been more emotional. She's been questioning why this happened to her and is nervous about starting school. She is also embarassed by the nasal tube she has since she lost so much weight. While we were in the hospital, the supervisor from the "child life" group suggested a website called the startlight foundation.  It's a sight for children  to speak with other children about their illness. We only went on it briefly, but I thought it would be important for her to have a connection with other chron's children that really understand what she is going through. Have you joined a support group? I found it very helpful and would like to connect her with some  of the kids from the group. She's still weak and not up to it, but I think it might  help to speak with others.She also sees a therapist, who is wonderful. I hope this helps. I can feel the pain in your letter. The psychologist in the hospital said it best when she said "These kids suffer such great loss".  There is just so much emotional and physical pain involved. I don't know how to address it all. Good luck to you and your son.

 Reply posted for jessicadarleen.

 Thank you so much for that advice.  I am also trying to get him involved in sports outside of school.  It isn't a fair situation and noone should have to go thru this but it hurts to see kids going thru it.

 Reply posted for MARSHA.

I am 16 years old and was diagnosed with UC about a year and a half ago.  At one point I was in the hospital recieving a blood transfusion and going through a severe liver failure and once i went back to school i noticed that a lot of the people that i considered close friends stopped talking to me and i became very depressed.  It amazed me how superficial these people became.  What I found that helped was that I went out and made new friends and now have two best friends that i cherish.  Have him try to meet new people outside of school that aren't going to judge him.  It's not a fair situation but sometimes you got to do what you got to do.  I am sorry your son is having to go through this so young.  My thoughts go out to him.