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Hi.  My 9 yo. daughter has been coping extremely well.... or so I thought.  Today, when I dropped her off for her girl scout camping trip, she said she was very excited to go.  Then she looked at the lunch box full of pills and angrily said "Except for those icky pills!" then she started to cry.  It seems she doesn't want the other kids to know about her condition and why she has to take meds.  I went to great lengths to be discreet about giving the lunch box to her leader (who is aware of her embarrassment and will maintain her privacy). I've tried talking to her about being open with her friends but she just can't deal with that right now. She just hates being different. Has anyone felt this way?  Thanks in advance for your input.  It really helps.

 Reply posted for Concerned Mom.

Thank you for the reply concerned mom!  I actually got my call back from our local chapter and she had a lot of helpful info for me.  I didn't see the link for local chapter info (but I do now).  Hopefully I'll get a connection for me and my daughter.  She is only 9 and we have a long road ahead!

 Reply posted for Concerned Mom.

Thanks for the input. A child psychologist is a good idea.  I will keep that in mind. She is normally very outgoing and very outspoken. This privacy thing had me stumped, but from what I read from the others, it's more usual than unsual - at least for a young child's perspective. 

 Reply posted for momanddot.

My daugther's Pedi GI practice was able to connect us with another family who is a patient in their practice and has been dealing with Chrons for a few years now.  It has been very helpful  -- even for me because now I have another Mom to talk to and she has given me some very good, practical advice.  I would ask your doctor's office, of course the other family needs to be willing to reach out to you.  If that does not work maybe you can call your local CCFA chapter?  You can find one in your area from this website.  I have also had useful conversations with the people there and they may be able to connect you with someone -- or you can participate in one of the local CCFA walks.  Or maybe you can even post a question on this forum with your location and someone may respond?  Good luck.

 Reply posted for Concerned Mom.

Hello:  I was reading your reply and saw that your doctor's office helped you find another child coping with the same problem as your child.  I am hoping to find another child for my child to be friends with too.  The doctor's office can help with that request?  I am not sure how to go about finding another child with UC (my daughter is 9) for my child to get to know and share friendship with.  Thank you!

 Reply posted for IBDaMom.

Hi:  My daughter is ok with taking the medications but she feels very alone and sad about her UC.  I haven't encouraged her to be open, I encouraged her to keep it private because kids can be very mean.  I thought that when she was older and more mature mentally and had friends she could truly trust, then she could reveal such a private matter without being made fun of.  I thought that a support group for kids (I just posted a question regarding support groups/connections for kids) would be a huge help.  If my daughter could find another kid close by who has the same disease, it would make a really big difference in coping.  At this tender age just knowing they are not alone would mean so much to them and the only way to really validate that would be to have a real friend battling along with them.  I sincerely hope I can find another child for her to hang around with in our home town.  Perhaps you may be able to find a friend for your daughter too!  I hope you can.  It would be great if kids could chat online about this to each other but I understand that they are rather young for online discussions.

 Reply posted for IBDaMom.

Hi, my 8 year old daugther was diagnosed with Chrons in March.  Along with our Pediatric GI doctor we see a Pediatric Psychologist.  It has been really helpful both for helping my daughter deal with her diagnosis and learning techniques to help her manage the stress of all the doctor's appts, blood tests, etc.  Overall my daughter is doing well, but she has times when she is very emotional and cries.  She hates having Chrons and I don't blame her.  The pscyhologist has told us that it is important to validate her feelings and not dismiss her sadness, but at the same time be positive about her treatments.  I have found another little girl in our area who also has Chrons and we plan to meet soon.  My daugther is very excited about meeting someone else with the same condition -- maybe your doctor's office can help you connect with another family?  It may help your dauther to realize she is not alone.  Good luck!

 Reply posted for IBDaMom.

It's not easy, and sometimes our kids try to be strong for us, but that being said they are still kids and this is alot for them to deal with, after 2 years of meds my daughter is now using Remicade ( only 1 infusion so far dont know how it is working yet) but she only has one friend she has shared her illness with everyone else just thinks she has some stomach issues. Although she handles the disease better than I would have at her age (11) she still struggles often, just the other day she announced to us that she was tired of being a "lab rat". How do you handle that? We simply let her vent and hold her and tell her that we will always be there and do whatever we can to make things easier for her, but we cant ignore the fact that she has the illness and we have to treat it as best we can for the time being, and continue to pray for a cure. It does not change how she feels but at least she sees that her family supports her and always will. All u can do is love your child, give her the love she needs and help her thru.

 Reply posted for IBDaMom.

i was a teenager when i was dxed w UC

I can honestly say at first i was very embrassed to even talk w/ my dr about my symptoms .

now tho.....5 yrs later.... i talk very open about it and i dont really care what other ppl think about it...but i do know alot of people dont quit get it ya know ....

they think you can just take anti diarrhea meds n call it a day they dont realize its so much more then just diarrhea ,,,

and its so much more then just takin something n forgeting about it . i think ppl should be more educated about it .

 Reply posted for wrknout247.

Thanks so much for your point of view.  Yes, we will be checking out camp Oasis next summer.  She needs to meet other kids with her same problem.  We will be at the Waupaca site (I think).

You will make a great camp leader.  I hope you get the job. Thanks again.

 Reply posted for sandpiper.

Thanks Sandpiper & worknout247

Your suggestions were helpful.  She will need to find a language to be able to communicate with others.  Right now, she needs to feel others view her the same as before.  We do use a lot of humor.  When she got a great hit in softball while on steroids, we joked about using "performance enhancing drugs" like Barry Bonds - but legal.  She is comfortable with family about it, but embarrassed with  friends yet.  

Keep the suggestions coming. 

 Reply posted for IBDaMom.

Hi--my 12 yo was diagnosed with CD last year.  In the beginning he would not tell ANYONE.  I was surprised at the need for secrecy because he is an open, friendly kid.  But the being different, as your daughter said, is hard. 

It has gotten much better, he is more relaxed.  He is still private--nowhere near where you are wrknout247--but he is open with friends and teachers he is close to.  I think he has seen that he can live with this and that friends he has confided in haven't treated him differently.  He even laughs about having been on steroids now, says his GI is his "agent" and that he's Barry Bonds...

I wonder if your daughter needs to feel like she is still the same person as she was before her diagnosis.  Maybe she needs a few good experiences when people see that she's on meds and don't treat her differently, or she tells a friend who turns out to be supportive.  My son has friends on different meds for different things, maybe your daughter does too, it has helped him to remember that other kids deal with their own issues.

Good luck :)

 Reply posted for IBDaMom.

Hey I am a 17 year old boy, i got diagnosed about 6 months ago. i still am unsure what to do. honestly i am very open with almost everyone in my school and it has made dealing with the disease much easier. people will ask their questions: why u lost weight or are always in the bathroom, and why you cant eat certain things and why you have to take a million pills. i feel it is good to educate people about this disease. i know it must be very different for a person dealing with it at the age of 9 and i honestly don't know but i would imagine that it would be more embarassing for a girl.  tell your daughter things get better and her true friends will understand and accept her with the disease. i truly believe that telling your friends and getting it out in the open is good for everyone who wants to have any sort of relation with a a person with crohn's. i hope this has helped you and your daughter.  also try to get connected with your local chapter of the ccfa she should also go to the Camp Oasis next summer i hear it is a blast and i am hoping to be one of the councilor. hope all gets better.