Kids with Crohn's - How 'normal' is life in Remission?

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crohnskid
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 8/4/2009 12:33 AM (GMT -7)   
This possibly sounds a strange question, but I am wondering if there are any parents out there who can tell us what life is like for your child when they are in Remission of their Crohn's.   DS (now 6) has been sick since a baby, has had multiple surgeries for fistulas and abscesses and finally been diagnoised this year with Crohns.   He has been on Flagyl since the age of 2, and Pentasa and Azathioprine since the beginning of the year.  The meds have relieved alot of his symptoms but he is far from leading the life of a typical 6 year old (he can only attend school for a few hours a day before needing to come home to sleep the remainder), still experiences alot of pain and has skin tags and a fistula that has still not healed.
 
Our question is...does it get any better than this, or is life as we know it now as good as we can expect for our delightful son?
 
Thanks for taking the time to read and reply.

crohnskid
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 8/4/2009 5:34 PM (GMT -7)   
Am guessing there cant be alot of parents of Crohn's Kids on this forum. Does anyone know of a forum or similar anywhere we could find other parents living through this disease with their kids?

Many thanks

BensMom
Regular Member


Date Joined Mar 2006
Total Posts : 57
   Posted 8/4/2009 6:52 PM (GMT -7)   
Hi,
 
I can't help you too much on the first part of your question as my son has not needed any surgery and experiences no pain with his Crohn's disease.  Crohn's has not stopped Ben from attending school or participating in any activities.  But there are a lot of parents in similar situations to yours who can give you much better advice than I can.  There is a forum for parents of kids with IBD that I think will help you a lot.  There are a lot of really great parents on there who have been through it all and can offer much support and advice.  It's really been a lifesaver for me.  The website is http://www.dragonpack.com/ibdsupport/parents/
 
Best wishes for you and your son.
 
Nancy (son Ben,15,CD dx 3/06; Remicade, Sulfasalazine, Fisol, Boswellia)

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/4/2009 7:49 PM (GMT -7)   
I am so sorry to hear about your son. I don't really have much to offer, but wanted you to know that I care. Your son sounds similar to the way I was before I started remicade...it gave me my life back. I don't know if that is an option for him or not. I wish you the best as you seek to help him.
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