Musings: November 2012

Have you ever wondered how to change a colostomy bag? Read on for how we do it. In this picture the bag is full of stool and is starting to tear away from the skin so it's time to change it. The bags typically only last a day or so.

The bag is off and I have just finished wiping it clean with a damp cloth. No oily soaps, baby wipes, or lotions can come into contact with this area. This helps keep the skin residue free so the bag will adhere better. The top larger hole is called a stoma and the little bottom one is a mucus fistula. When he had a colostogram done they put a tube through the mucus fistula and ran barium through it to see what his insides looked like. The area is a little red because it irritates his skin when the bag is pulled off. The stoma is his colon stitched up into his skin so that it won't fall back in. Some stoma's protrude more, but Stuart's is flush with his skin. When he has his colostomy reversal surgery in a few weeks they will reconnect the stoma to the mucus fistula so that it is one continuous line and stool or poop will travel to his new anus and out into a diaper. If you were to look at his bottom you wouldn't be able to tell that anything was wrong. The surgeon did a great job of creating an opening for him.

The intestines are usually passing stool so this near constant flow makes it tricky to put the bag on, because you need it to be completely clean and dry. The acid in this liquid form of stool is really irritating to the skin so it's important that it doesn't rest there for long.

I like to use this product called Eakin Seal. It's a fruit pectin based product so he won't have an allergic reaction to it. It also absorbs moisture well. The ostomy nurse at the hospital had us using two kinds of special ostomy wipes and a powder. After a two weeks of using them his newborn skin was raw and bleeding. I feel those products were not sensitive enough for his skin. This Eakin Seal is much simpler and safer and you can use it over any type of wound/ostomy to promote healing. It's made in Ireland and I found it over the internet. It's expensive, but fortunately our insurance will cover about a months supply. Okay, enough about Eakin Seal.

Front of one type of colostomy bag. There is a sticky 'tie' that I roll up at the end to close up the bag. These bags will come in a box of 10 and cost $130. Our insurance will only cover 20 bags a month and he goes through one a day. Last month we ran out of bags so I went to all the colostomy supply companies and asked for free samples of their pediatric products. In a pinch you can also place the Eakin Seal around the stoma and cover it with an oversize diaper strapped sideways across the abdomen. I learned this trick from an imperforate anus internet forum I belong to. People in other countries don't have the access to colostomy supplies that we do so they improvise! One mother in Guatemala said she went through 20 cloth diapers a day trying to make sure her son stayed dry.

Back of the bag. There is a starter hole that can be cut larger to fit the size of your stoma. This hole fits little Stuart's stoma okay. When you are ready to place the bag on you peel off the paper and place it directly over the stoma. It's has a sticky backing like a sticker that adhere's to the skin.

Before I place the bag on I blow dry his skin to make sure it's really dry. Stuart likes this part.

Then I place a piece of the rolled up Eakin Seal over his stoma. When it comes into contact with moisture/stool it will expand and help keep the stool from sliding around where it shouldn't. I don't bother doing anything special for the mucus fistula. We used to cut a hole for it on the bag and place the Eakin around it, but it's so small and nothing leaks out of it. So we just leave it alone and it makes changing the bag much easier

Vwa-la! A new bag is placed over his stoma. The colostomy bag doesn't seem to bother him, but he does seem a bit curious about it and will pull on it when it's exposed.

Changing table for all the medical supplies. He hates being on that table though so we change him on the bed. It just means that my side of the bed is always covered in pee and poop. A small price to pay to make baby happier.

Twice a day I stick this dialator into his new bum-hole ( just a quick slide with some ky jelly). He started at 10 mm for the first two weeks after his pull through surgery (pull the colon down and create the new opening) then we went to 11mm for two weeks and finally we are at 12 mm. We do this so that his new opening won't close back up and we will continue to use it until he has solid poop. He used to scream and cry when I put the dialator in, but now he seems resigned to it and doesn't cry. Anytime he's getting a diaper change (he pees normally) he will clench his legs closed together as hard as he can and I have to literally pry them open. He even arches his back and rolls over the side to keep his bum from being touched. He had an appointment with a geneticist the other day (everything was normal) and he couldn't get Stuart to open his legs for him. The doctor said he had never seen a kid so determined. We had to laugh about it and even baby was chuckling over his new trick.