3 year old and an Ileostomy

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Hi all, just looking to see if anyone here has a toddler with an Ileo.
Matt had his surgery yesterday, after 2 Infliximab infusions failed. He woke with an Ileostomy.
Im just finding it hard to get my head around how we deal/cope with it.
I'm sure we'll get into a habbit with it soon, but am looking for some input.
Thanks, Nic xx
 
I have no experience with that at all, but I'm sure you'll get into a routine with it. Sorry to hear your little one has to deal with this at so young an age! Good luck to you and your family!
 
Hi Nic,
Sorry to hear about Matt. I guess this is temporary? Did they remove anything or did they just bypass his colon for now to let it heal?

I've been dealing with an Ileostomy for over a year now so I can offer some tips! The most important thing is to find a system that works well for Matt. It might not be the brand that the hospital started you off with.

If things are working well, and you're getting 3 to 5 days of wear time, then that is pretty good. Working well means the wafer is not itching Matt, and his skin is not very red and raw looking when you change the wafer. It also mean the wafer is not leaking or smelly. Hopefully his ostomy is 15 to 25mm above his tummy for best results.

My output is fairly regular and routine and hopfully Matt's will be too. You can just reach over and give the bag a feel and you'll know when it's needs to be emptied. For me, it's 6 to 8 times a day. I have a 3 and 4 year old, so I imagine Matt will not be able to deal with this on his own until he is at least 5 years old or so.

Another handy forum for you is the Parents forum on UOAA at this link:
https://www.ostomy.org/forum/viewforum.php?f=11

Good luck and let us know how Matt is doing.
 
Hi Nic

I don't have the experience that Cindy and Joe have, but I thought I'd chime in with my two cents. I'm only a couple of months in with my ileostomy and I know that I found it physically awkward (with the appliance change---I love feeling physically better!!)and at times, I have emotional difficulty with having an ileostomy.

I'm sure you've been told all this already, but keeping Matt on a low residue diet for the first few weeks and making sure he's hydrated are really important. If he gets a tummy ache, it will be important to check out to make sure he's not got any kind of blockage.

Did the hospital give you a bottle of some sort to empty his pouch into to make things a bit easier for you? There should be stoma nurses (ET nurses) at the hospital who will take a look at Matt's stoma and make some recommendations around what kind of system/appliance would be most suitable for him. Later on, if you find the appliance doesn't work, you can always go back to the ET nurses and have them provide you with other samples. The stoma size usually changes in the first couple of months, so the ET nurses are great to stay in touch with so they can assess the size of the stoma. They might also give you a sizing chart so you can keep up with any shifts/changes to the size of his stoma.

Once you start changing his appliance (twice a week), you'll get in to your own rhythms with it. If Matt's skin is sensitive when you take the appliance off, there's a product called "Remove" which you apply around the appliance and it comes off smoothly and without any pulling.

Try to get one of the ET nurses to come speak to you and check Matt out as soon as possible. They will be an invaluable resource to you.

It does get easier, Nic. It's just really early on right now, and both you and Matt will need some adjustment time. Go easy on yourselves, and keep us updated on how you and Matt are doing.

Warm regards,

Kismet
 
Thank you all for your relplies.
For now Matts stoma nurse and nurses are taking good care of thing's. Tomorrow we're hoping for a crash course in maintaining his care and looking after his Ileo. Its all a big learning curve, but we need to get with it. He's not old enough to understand (will be 3 this week), nor take care of it himself.
Again, thank you. I'm sure I will be a regular visitor here in the future!!
Nic x
 
Hi Nicola - Ditto what the others have said about the diet and hydration. Good luck with everything. Poor little guy - I'm sure he doesn't really understand what's going on fully. Big hugs to him from all of us fellow ostomates.

- Amy
 
Nicola, my heart goes out to you. You will no doubt be a quick learner for taking care of his ileostomy. I know it must seem incredibly daunting right now, but I'm sure you will cope with it amazingly well. You have the heart, and the courage, and soon you will have the know how.

He may have some 'owies' to begin with, and I would imagine that will be the hardest to deal with. No doubt the stoma nurses will be very good with you and Matt, simply due to his age. I know that most stoma nurses will be right on the phone with you, or come to visit very quickly if you need help. We are also all here to help as well. So you wont be alone, and dont panic! I think there are some of us in the UK, and if you need to PM us, please do so.

:ghug:
 
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