At our first Urology clinic appointment we were commended on how beautifully we have taken care of Dominic’s Ureterostomy. We dont often get brownie points from the doctors so left feeling pretty puffed up and proud of ourselves! 😂
As Dominic only has one functioning kidney, and a “double loop” ureterostomy – there is never any urine in his nappy, or bladder for that matter, it only comes out of that little hole in his side.
A healthy stoma is pink with no redness or inflammation around the outside. Honestly, we don’t ‘clean’ it at all – Dominic has regular baths and we will wipe around it when changing a nappy, but we don’t poke at it with anything at all.
Just to explain what you’re looking at in the photo – the puffy lump is the inside of Dominic’s ureter folded open and back on itself. This means that the only thing touching the urine should be the inside of the ureter, which does this all day everyday in everyone and therefore doesn’t hurt or degrade the same way urine constantly touching your skin directly would.
For us, the best thing we have found is Morrisons own brand cheap as chips ladies incontinence pads. We have regular ones for during the day which we change every 2/3 hours and the super heavy ones for night time – which will last for about 6/8 hours.
Trying to keep a urine stoma bag attached to a baby without it leaking seems completely impossible. We were on a train once and had to strip Dominic naked because one leaked and got everything. I’m sure someone out there has managed it, but short of supergluing it to him – I’m yet to work out this secret.
It’s important to change the pads regularly to keep the skin around the stoma from coming in contact with the acidic urine and breaking down.
So what is nappy origami?!
- You take the pad and fold back one edge onto the sticky bit in the back
- Make sure the stoma is healthy, clean and ok (slight redness top right, noted – changed nappy after hour and a half and it had gone. It’s all about keeping the urine away from the skin).
- Place the pad across the stoma. Thickest bit in the middle, folded side at the bottom and resting on the leg joint at the top (the sides of the pad will rub and folding it back makes it padded and more comfortable). Tuck the pad around the side and bring the centre of the nappy up between the legs – this bit of the nappy then physically sticks its self to the back of the pad so it doesn’t wriggle free when Dominic moves.
- Do up nappy as normal – you can hardly tell it’s there! 😊
I should say that the consultants we have seen operate the ‘double nappy’ approach, but as this doesn’t stick to the outer nappy. It slides and chafes the stoma – it can’t be helped. So… I don’t like it. I prefer our way! However:
- You have to turn a second nappy completely inside out making sure that the only bit that goes against the stoma and skin is the bit that absorbs urine. This then gets placed horizontally across the tummy and stoma and fixed in place by the nappy.
Well, that’s the theory anyway. It lasts about 30 minutes on Dominic before it’s wriggled free and there is pee everywhere. Or the edge of the nappy has chafed either the top of his leg or the stoma and it’s started to bleed. I’m not a fan but at least I can say we tried!