Tuesday, February 7, 2012

Changing a colostomy bag 101

People have a lot of questions about Noah's disease--and I still do too!

Some questions have been:

How do you bathe him? We have some great sponges (that the hospital gave us) that soap up when we put water on them and we simply wipe him clean with those on the days we don't change his bag. It cleans him fine and it's fast, but I'd much rather give him a bubbly warm bath every day! On the bag changing days we give him a nice long bath. Noah LOVES it. We put him in the baby tub and the warm water helps loosen the adhesive on his skin so that I can tear it off more easily. Then we wipe the skin around the stoma to get the adhesive and anything else off so that when we put a new wafer on it's nice and clean. We always cross our fingers that he doesn't poop during all of this :) But it's not a big deal if he does--we just dump the water and have another bath!

Do you change the bag every time he poops? No way. We'd be tied to the bathroom all day! The wafers, if we did a good job, last usually 3 days. But we're still learning better techniques and it's a continual learning process (don't heat the wafer for any longer than x amount of time, don't fold the bag over itself because that tears it off faster, make sure the skin is completely dry before applying the wafer, cut the hole a little bit on the smaller side so no poo gets through the crack, etc. etc. etc.) The last bag we put on lasted 4 days! That was great. But last week we went through 3 in one day! So you see...it's just constantly changing, but we're getting better!

How does it stick on? I'll briefly outline the process. 1- after you tear it off in the bath tub, throw the bag away, take him out, wipe his skin dry. 2- Mark cuts a hole in the wafer just a little bit smaller than the circumference of his stoma and heats up the rubbery wafer until it's soft. 3- blow dry Noah's skin so that it's warm in order for it to mold to the wafer--but not too warm or it will slide off. 4- Place the wafer around the stoma. 5- Press down the wafer to his skin using a  Q-tip for around the stoma. 6- take off the strips of the adhesive part that surrounds the wafer. This acts as an extra security for the wafer. 7- as soon as the wafer and adhesive parts are secure, grab a bag, take off the strips of the adhesive and stick it over and around the stoma.

Can you touch his stoma? Yes! It's virtually painless for us to touch it. Noah can't feel it. Our intestines don't have nerve endings, so you can actually cut them, poke them, etc. The only way that we feel pain in our colon/large intestine is when it expands (fills up with gas). This is a big blessing especially since we have to put something so tight around it.

Does he still have to wear a diaper? Yes! He still urinates. He's very good at it too!

Are the supplies expensive? Yes! But luckily our insurance covers most of it! I just made an order of 20 bags and 35 wafers and it was about $75. Without insurance, it would be almost ten times that!

Does he cry while changing the bag? Umm it depends. I make sure that we change it around the time that he needs to eat so that I can sit and nurse him on my left side (so that his stoma is on the up side) which always makes him happy while Mark does the dirty work.  But he's no dummy and knows what's coming after we take him out of the bath tub, so he usually starts to fuss/cry at that point. We're getting faster though, so if he is upset, it's not for too long.

Can you change it by yourself? I hope I never have to! This is part of the pain--I have to wait for Mark to get home from work so that we can change it together. He's had to leave work in the middle of the day just once to change it with me. It's just tough to do it correctly when Noah's kicking and flailing his arms around. I'm the one who holds him down and Mark does everything else. I know how to do what he does so if I had to do it myself, I could.

As I've mentioned before, he has to poop in a "colostomy bag" that is attached to his "stoma" which is located just a couple inches to the right of his belly button (his left side). Here is what a "bag" looks like:
 The white tab at the end is the opening. You fold that a few times and stick it to Velcro and seal it shut. You attach the bag to the "wafer" shown below:
 It's still in the package so it's hard to see, but that tan part is what we have to heat and cut the hole out of to fit around his "stoma"
 We use these circles to help measure what size hole to cut. His stoma is a little smaller than the 4th largest hole.

 I thought I'd throw him in-- makes the picture a lot cuter! :) You can kind of see the outline of the bag under his onesie. It's on his left side.
This is our routine--I take the syringe and stick it inside the bag and drain the contents out. I put everything in the toilet and rinse the bag out probably 4 times to get it somewhat clean. I could empty it into the sink as well. I clean it out every time I change his diaper. It doesn't take long, and he sits pretty still on the little bed that we have next to the sink. This will be trickier (I'm anticipating) as he gets older and more mobile. Luckily this will end in around 6 months!

As mentioned earlier, last week was terrible as far as bags go. In one day we had to change it three times because it was leaking. We think it's because he's moving a lot more now and that not only jostles it a bit more but moving also heats his skin which can make the "wafer" part slide around.

Something a little unfortunate is that Noah's poop stinks! A lot! And most newborn poop doesn't (unless he/she is formula-fed). I can't imagine what it would smell like if I fed him formula. I think it's because he's operating on -11 inches of his colon? Let's hope that his poop after the second surgery isn't so unbearably stinky. I can only imagine what the adventures are ahead for us! I heard from another mom with a son with Hirschsprung's that she had to take a dilator and put it up her son's bum several times a day for the first year after his surgery so that it didn't build up scar tissue. SO...I'm just happy that he won't remember ANY of this when he's a teenager :) but he'll have some pretty "sick" scars to show off.


  1. you guys are amazing!! noah is super lucky. thanks for explaining...great post!

  2. This was such an interesting post! It's one of those things that you just don't have a clue about unless you have to do it. It also made me realize that I should not complain about changing diapers anymore...you have to change diapers and a bag! That's way harder!