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Baby with Stoma, support? Products. Lock Rss

Our four month old baby was born with a complex heart condition. After undergoing her first major heart surgery she had complication after complication.

She continually had stomach troubles and the issue has hopefully now been resolved. She now has a temporary stoma which we are struggling with. The stoma nurses at the children's hospital were less than helpful and we are continually having issues trying to get the bags to stay on and not leak as she is so small.

Is there an online support group anyone knows of? Can anyone suggest some products to help protect her skin from the very sticky bags that are leaving it all red?

Thanks very much in advance.
Sorry to hear of your little ones tough start to life, it sure is a lot for new parents to take on board.

I'm unsure of any support groups in oz but someone should know!? Alternatively I'd contact a different children's hospital and see if there's a paeds nurse specialist you could speak to. Or stoma nurse. it may be a case of speaking to 10 different people telling the same story before you get to the "helpful" person.

Here they often use cavalon on the skin, letting it dry before reapplying a bag. This helps protect the skin from breaking down. Unsure if its called the same in oz

Just came across this website and its products, unsure if this is what your already using

And this may help direct you towards a support group

Best of luck on your journey and getting it reversed once things have settled down again smile
Have you got any creams etc from the stoma nurse?! You should be able to apply a spray stuff to her skin before the bag that will help it stick but also help protect the skin I believe (has been a while since I looked after a baby with a stoma so struggling to recall sorry)

How long do you manage to get the bags to stay on?! Its failry common with the little babies that they dont last overly long due to them being so small and wriggly etc. I have managed to get a few to last a couple of days but often end up having to change them 3-4 times a day or sometimes even more often.

Sorry that the stoma nurses havent been overly helpful. Dont know of any support groups Im afraid but good luck with it. Stoma bags can be VERY frustrating! Lol.
Thank you so much. You have no idea how helpful that is!
Lol. Good to know that you managed to get some help from what was said on here. smile bumping incase anyone else has any more advice for you.
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