Toddlers and Ileostomies.

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Joined
Jul 3, 2011
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103
Hello all.
I'm new here, but have joined because my son Matt who's almost 3 was diagnosed with Crohns about 6 months ago.
We're facing the prospect of him having his colon removed and having an Ileostomy. Does anyone here have a child that has undergone this- Talking around Matts age? He's due to begin nursery in September and he needs to be toilet trained. We were having a hard enough time doing that before they wanted to throw an Ileostomy into the mix!
We just want to know how you're little one dealt with it, and how they are now.
Thanks in advance for any help.
Nicola x
 
That seems such a drastic action for one so young. What about Remicade or Humira as a last ditch hope?
 
Is Remicade the same as Infliximab? If so, then we are hoping to be trying it soon. They have warned us to prepare for a possible Ileostomy. Matt had a few rounds of Cyclosporin back in January that did seem to help, but now we're back at square one again. They won't allow it to be administered again. Now we just wait for the green light for Infliximab, and hope.
 
Yes they are Nicola. I hope he gets to try that before going the surgery route. I'm sure it would be very tough to have a child with an ileo. Good luck!!
 
I'd look at posting this in the parents forum as well. Lots of experienced folks over there.

I hope they try other treatments first for you little one before they remove the colon! Bless.
 
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