Community Forum

My daughter was diagnosed in Dec 2008 at the age of 10.  She was so sick and was put on Prednisone and despite the horrid physical side effects (moon face) she was at least symptom free.  We were first told it was Crohn's and switched to a Dr closer to home and he said she has UC.  She was put on Asacol and it worked great for a while. Then she caught a cold and started with a flare up so now she also takes Rowasa enema (I feel so bad for her!! kids should not have to deal with this stuff) It has kind of been a roller coaster with the flares -- a week or so of no flare and then it comes back again.  I quit my job last year so that I could be more available for her -- she missed about a month of school and  even though my employer was understanding, I got tired of calling in to say I could not work.  It is much less stressful now that I don't have to worry about missing work when she misses school, etc.  

We saw her GI today and she felt great during the visit - we decided to switch her from Asacol to Lialda (wish we did this before I paid $300 for Asacol Rx!!!) and she was so excited to take 2 pills once a day instead of 3 pills twice a day.  I found myself thinking "we can deal with this - she is going to be fine and just like a regular kid"  Well, about 2 hours after this she ended up on the toilet in pain. I feel so defeated. I want so much to have the answers for her.  I know her case is very mild considering what it could be but I get scared that if we can't handle things now, how the heck will we handle them if she gets worse?  I should find a therapist but without my job our funds are limited and it is an expense we just can't do right now.  How do you all deal with the roller coaster of emotions??  Sorry for the rambling....I have a lot of thoughts in my head right now and I just need to get them out.  Thanks for reading this!

 Reply posted for Lizzies Mom.

Hi - (and also, hi to Lizzie's Mom - I haven't been on here in a while!)

My son was diagnosed with UC when he was 13, missed the last two months of middle school - there is NOTHING harder than having a sick kid!

Because I've had UC for 23 years, I am a good coach for him... wish I didn't have to be. And of course I know he inherited this from me, from my side of the family..... yeah, issues. We've dealt with a lot.

A support group through the ccfa would be good, or if there's a teaching hospital or medical center near you, maybe there's a support group for other sick kids... even if not for IBD,  it could help. I had a friend, when my kid was so sick with that initial flare, who worked at a pediatric oncologist's office and told me about a support group there. Even just things like.... the kids would agree to play online video games together, each from their own homes.
My son played some of those games and it really helped him, when he didn't feel good enough to have friends over.

With all the years I've dealt with this disease, NOTHING was harder than when my son was diagnosed - so, I feel for you. It is SO wearing. Hang in there!

 Reply posted for FlowerPower.

I know how worn down you can feel, I have been dealing with this monster of a disease for 6 yrs now with my daughter.   She was 4 when diagnosed with CD.  

This community is a wonderful source of information/hints/tips and often the sypathetic ear that you need.  I understand that with limited funds seeing a therapist is out of the questions (it is for most).   However, check with your local CCFA chapter, hospital, even docs office to see if they have a support group.   If they don't, you may want to start one.   A few years ago my daughter and I joined one.  It was helpful because she was able to meet other children in the same position and I was also able to meet some parents in the exact shoes.   We did stop going, however, but only because the kids were older (12/13/+up).   At the time my daughter was 6/7, so the age difference became a problem.   The teens had whining sessions and their negativity seemed to be rubbing off a bit on her.  Since she had been living this "unique" lifestyle for so long, it has become second nature and part of life.   

This past summer my daughter went to Camp Oasis for the first time.......I highly recommend it.   There is criteria to be met and their docs need to sign off on the venture, but she had the time of her life!  You may want to check it out.  

Please know that you are in good company on this site.   Lots of us just doing what we can to make each day as good as it can be!

Be well,

Lizzies Mom

 Reply posted for FlowerPower.

Maybe there is a ccfa support group in you area, or you could organize one.  It doesn't sound easy, but hang in there.