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Anyone with experience from going from mild to severe crohns?


Mon, October 11, 2010 10:26 AM

my son was diagnosed with crohns (after about a year of tests, etc) at 13. he is now 19. he has had periodic flare-ups, usually lasting a few days, then he might go months without symptoms.  this all changed in july.  he has pretty much been in a constant flare-up - he'll have some mild days, but just can't seem to shake it.  he is on 6-mp and apriso. recent colonoscopy looks good, upper gi shows some stricturing.  he's in nearly constant cramping and burning pain in gut.

anyone experience this? could it be something else? the dr's seem perplexed as his colon looks so clean, yet he's lost 15 pounds in last several months??  what do we do next?


thanks much!

FPO ca mom
Joined Sep 4, 2010

Tue, October 12, 2010 5:40 AM

 Reply posted for walkers mom.

Thank you! unfortunately after I wrote that post he ended up in the hospital for exactly that problem   Very high fever and because his immune system is so shot, hard for him to fight it off.    I will check into Remicade today - we had discussed before but not gone there yet.  Thanks again for your reply!

FPO ca mom
Joined Sep 4, 2010

Mon, October 11, 2010 6:07 PM

 Reply posted for CA mom.

Our son went through the same thing when he was 15.  We found that switching him to Remicaide was the only thing that helped his Crohn's.  However,  the down side of Remicaide is that his immune system is almost non-existant no matter what we try.  It's a real Catch-22 as he's not flaring up from the Crohn's but catches very virus that he's exposed too.  Good luck.

FPO walkers mom
Joined Feb 25, 2010

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