Baby 4 weeks old with stoma-how to stop leaks and how often do you have to change it

[BabyBoden]

My 4 week old has a stoma. The day he was born we found out his bowels weren’t connected and he was operated on to create a temporary stoma.

The stoma bag is a nightmare! It leaks and we have to change it 2/3 times a day when we were told they should last 48 hours. We have a stoma nurse who says we are doing everything right but can’t give us any tips to make it last longer.

My little boy now has sores around the stoma which won’t heal. The placement and the fact he moves around a lot means it’s an impossible task to keep it on. It’s so sad to see him cry every time we have to change it as it’s obviously sore.

What I would like to know is:

1. how often are people having to change the stoma bags in newborns due to leakage


2. Any tips on helping the bag stay on


3. any tips on helping the sore parts heal?

thanks in advance!

I can't help personally, but felt I couldn't just read your post and leave. Have you looked at the Colostomy.uk site? This link is about caring for babies with stoma's and may be of some help to you www.colostomyuk.org/vicki-and-harrys-story/ I do hope someone with some experience of this gets back to you and can offer you some help but in the meantime I'm sure you are doing everything you can to look after your son and keep him as comfortable as possible.

Our son had a stoma from newborn. I know it's a lot to cope with so I really feel for you but you will get used to it and it will become routine. It's hard to remember some 20 years later but I think we used to get a couple of days per bag.

Your stoma nurse sounds a bit useless to be honest. She may be right that you are doing everything possible but here are some thoughts in case you haven't tried them.

Have you tried different appliances? For example a two piece bag might be better. The suppliers should send you samples eg www.convatec.com/en-gb/products/pc-stoma-paediatric-care-products

Are you using barrier cream and removal spray? Again you can get free samples.

If possible, and I know it can be difficult, get some fresh air to the skin when changing the bag.

Make sure the skin is dry before attaching a new one, with or without barrier cream.

Hope that helps - if no one with more recent experience shows up feel free to PM me.

thanks for your messages @Baby2needsaname and @Boadicea2 . We are currently using the template the stoma nurse has provided and the one she used so I assume the shape and the size of the hole is correct.

we are currently using the coloplast powder and barrier plaster which seems to make the bag leak quicker which is frustrating. Previously used cavlon which is a barrier liquid but told it wasn’t good for healing sores just preventing. We also use Apeel to take the bag off to ensure the stickiness doesn’t cause too much irritation.

so you can see why I’m at a lose! We are doing everything we are meant too but nothing seems to work. It’s a vicious circle. Every time we change the bag it makes it sore however we can’t leave the leaking bag on as that is what made the sores in the first place!

Just popping back to say it does sound like you are doing everything. One thing to try - I would check the template against the baby as stoma size/shape can change as they heal after the op.
A call to colostomy uk as suggested by a previous poster might be in order.
Breakaway www.breakawayfoundation.org.uk/
also offer help to children with issues like your son (if I've interpreted correctly). Might help you not to feel so alone.

Hang in there - it does get easier - as I said my son is now in his twenties, a veteran of many ops but doesn't remember the stoma stage at all.