We toiled for about a month with leaky bags and wafers on our daughter before figuring out something that works reasonably well. Hopefully this post will help anyone else struggling with an infant ileostomy.
We order everything from a company called EdgePark. Here are the supply numbers: Hollister Bag: 3778, Convatec Wafer: 411642, BD 60ml Syringe Luer-Lok Tip, REF 309653 (to get stool out of the bag).
We prefer Convatec brand wafers because they are more pliable. Hollister wafers didn't work well on our baby. This is a 30 mL locking syringe. We usually use a 60 mL.
(Click on photos for large view.)
The wafer has about an inch radius of tan sticky surface that needs to be cut to the shape of your infant's stoma and another inch of mesh tape. It also has a clear plastic disc on the top-side onto which we stick the bag. The bag has a sticky seal that attaches to the plastic disc. The syringe fits right into the end of the bag and can be used to drain the stool without messes (just make sure to put the cap back on the bag when you are done).
Seven important things we've learned:
#1 Get all your stuff ready before you start.
#2 The site must be completely dry. If she stools onto her skin while we're changing her dressing, we start over.
#3 A cotton ball prevents her from shooting stool onto us and the wall. It can also absorb enough stool to prevent having to start over. We often go through 3-4 cotton balls per change.
#4 Heating the wafer is critical to a successful change.
#5 We always change her dressing every 72-hours.
#6 If possible, there are always two of us to change her dressing. One keeps her calm and helps organize and hand over supplies while the other does the work. If one of us is unavailable, we call a trusted friend.
#7 It's hard to change the bag when she's crying. A bit of sugar water at the end of her binky calms her right down. (It's not just us! They did it in the hospital!)
Here are detailed steps explaining how we change her bag and wafer:
1) First we take Bridgette's onesie and put it over her arms so she does not get in the way.
2) We then put a cotton ball on her stoma (intestine, this really helps in case she decides to let fly while we are changing the bag).
3) We cut out a hole in the wafer that is just a tiny bit bigger than her stoma. Ideally you should measure the stoma and trace an outline on the back of the wafer, but we have been more or less "eyeballing" it at this point.
On the left is a used bag/wafer. On the right is a new wafer with the hole already cut. You can see how the acid in the stool eats away at the wafer. Some people prefer bags with designs, like the Convatec koala bears, because the stool grosses them out. We like the clear bags because a) we can see through them to put them on properly, b) we can easily check her stool output, and c) this design has the cap-closure which is less messy for us to empty.4) We put a hair dryer on hot and aim it towards the wafer while we do the next step. The wafer must be heated to be pliable and mold properly to her skin. Leaning the wafer up against a book or wall often helps.
5) While the hair dryer blows, we clean Bridgette's skin with a moist gauze pad, no soap. Baby soaps have glycerin and prevent the wafer from sticking.
6) Once Bridgette's skin is clean, we pat it down with a dry gauze pad.
7) When her skin is dry, we take the hair dryer, switch it to 'cool' and then dry her stoma area thoroughly for one to two minutes.
8) Once we are satisfied, we turn the hair dryer back on hot and let it continue to blow on and heat the wafer while we do the next step.
9) We place stoma powder on any problem areas on Bridgette's skin. The acid in her stool eats away at her skin, and the powder absorbs some of the ooze and helps her skin heal.
10) We remove the hair dryer and put stoma paste around the inside edge of the hole on the sticky side of the wafer (the part that will go against her skin).
The stoma paste is easier to handle if you put it in a medicine dispenser. Initially we were trying to put the paste directly on her skin, but it's like pizza cheese... really hard to disconnect from the dispenser. It's more accurate to place the paste on the wafer.
11) We make sure the wafer is not too hot, remove the backing, and place it on her skin around her stoma, checking that there are no wrinkles in the wafer. Hold this down for at least 30 seconds.
12) We remove the cotton ball and place the bag onto the wafer, making sure the plastic disc of the wafer is dry before putting the bag on.
13) We place a reusable heat pack over the whole area to be sure the wafer seals to her skin. Be certain the heat pack is not so hot that it burns your baby. (Disposable heat packs work too, but again, check the temperature.)
14) Finally, we put water-proof tape around the very edge of the wafer in the event that it leaks and to help it from popping off when she cries.
We usually give Bridgette a sponge bath at this point which can be done in less than five minutes. The water-proof tape helps make sure that the wafer does not get wet.
It used to take my wife and me 45 minutes to an hour to do a bag change and bath, and we burned through supplies - sometimes 5 to 10 changes a day. Now we can do a change in 10 to 15 minutes and a bath in less than 5 minutes. If Bridgette releases stool while we are changing her, it takes a little longer, but bags usually last 3 days.
*** Now that she is six months old and eating solid foods, we are using larger wafers and bigger bags with a gas vent. We are consistently getting bags to stay on for three days without leaks. ***
I hope this guide helps anyone who is frustrated with leaky bags and wafers for ileostomies. If you are struggling with a similar situation, feel free to contact us!