Stoma bag problem

[tgrg]

Hi,

We are really struggling with our LO stoma care
Our LO is 1 month old had ileostomy (stoma)due to bowel obstruction when he was 4 days old.

We have been changing his stoma bag and baseplate every 4 hrs to 12 hrs because it leaks so frequently.

Our stoma nurse have tried most of the products available in the ward but no improvement.

On top of changing base plate and stoma bag we have to do stoma loss recycling ( putting the watery poo back to the colon from another stoma and he passes those as poo from his backside )

We are seeing the surgeon in a months time to see the progress.

It's the leaking stoma bag/ Base plate that's putting us at the our tethers.We are so stressed out and anxious all the time due to worrying.

Due to the leaking our LO is not having enough tummy time and we are so frightened to take him out as the bag falls off so quickly.

It looks like the leak is under the Base plate and comes from inside to outside.

The products we are using are:

Stoma bag ( with bears pictures )
Baseplate( Coloplast easiflex)
Hyper seal washer( like sticky doughnut that goes in between skin and Base plate.
Barrier film spray/ stick ( cavilon)
Hydro frame mini with Manuka honey to seal around the edge of the base plate.
Clinmed adhesive remover.

The skin around the stoma is starting to get red due frequent changing and leaks.

What we do is we clean the skin with warm water then let it dry and apply barrier film stick and put hyperseal around the stoma and the put baseplate over it then apply the bag on. And then pray that it stays on.

We would really appreciate any advice/ suggestion :how to make the Bag and baseplate attach longer.

Thank you

try using calamine lotion once the area around stoma is cleaned. Allow calamine to dry before putting new bag on. Especially in the heat the skin can become too clammy - so calamine keeps it dry and the bag sticking. (you can buy calamine lotion in the pharmacy)
I also found the washer to make things worse as liquid poo would go under and make the whole bag lift up. Try protective powder instead, and make sure the baseplate is cut to fit snugly.
have you tried a drainable one-piece bag rather than using a 2 piece with baseplate?....they can be better.
to me it sounds like to many things between the skin and baseplate, so i'd try without and use calamine and protective powder and see how it goes.
good luck!

Oh you poor thing. But isn't there advice at the hospital, particularly as he's so young?

Have you got a stoma nurse? I find ours ok but to be honest usually sort it out myself! We use high output bags which can be emptied as and when. Very useful as dd passes litres of wind and I put a 2 litre urine bag on to the nozzle if that makes sense. Her skin gets very sore I only put Cavilon around the stoma even if bleeding.

Good luck.

Is there a fb support group you could ask? There's bound to be one. I find them really supportive for the various issues we have xx

And don't stress about tummy time. You have enough to contend with

Have you tried paste instead of a washer /ring? Sometimes works better. Or a convex system. Has he been remeasured? Hope you get a solution

Hi finally the stoma 2 piece system lasted for 40 plus hrs few times .phew!!

The reason is I bought adapt hollister medical adhesive spray on Ebay that came from Israel ( paid £39 ).

I asked our local stoma nurse whether it can be prescribed under NHS but says they can't .( reason is not in formulary of Queens Medical Centre, Nottingham)

I rang hollister company in wokingham, UK and they said it can be prescribed under NHS and they asked me to ring GP with the product code so it can be prescribed by GP.

Anyway I bought it from this UK company this morning and it cost me £21 ( eBay was £39).

Next time I am going to see the GP and ask him/ her to prescribe this product under NHS prescription .

Hope this helps to other patients/parents.

It sounds really hard and not anything I have ever had to deal with. But I did want to say you REALLY don’t need to stress about tummy time right now. He is so young. (My third kid never got any tummy time (benign neglect...)). It’s not that big a deal, especially at this age. So don’t turn that into a thing that makes your life harder. I know that’s not really the issue, but thought worth taking that tiny point off what must be a long list of worry. Good luck! And enjoy your LO.