Monday, October 6, 2008

How to Get an Ileostomy Bag & Wafer to Stay On Your Baby's Skin

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!


Chelsea said...

Although you haven't yet called me to help with a change, I still consider myself a trusted friend. :) I am willing to help any time--provided your dogs are in the mood to entertain my preschooler.

Kel said...

I have no doubt I will call you for help sometime, Chelsea! The grand thing is, we've only had to get help twice. The first time, a friend rang the doorbell right as I was thinking about who to call. The second time was during the Priesthood session, so I called a lady who didn't have little kids at home.

Consider yourself on the trusted friend/calling list!

Anonymous said...

Thanks for the info. Our daughter is 4 days into her ileostomy and not yet home, but this will help..

Kel said...


I'm sorry you have to deal with an ileostomy, but I hope it helps your baby girl! It seemed so overwhelming to us at first, but it does get better.

You'll notice the items we buy are from different companies and not designed to work together. But they work for us! Convatec makes a similar wafer in a bigger size that we may switch to soon as our daughter is getting to be such a chunk.

Feel free to contact us about anything! I'm also on Facebook as Kelly Hoose Johnson.

Anonymous said...

Hello! Thank you for posting your suggestions online. I'm glad we are not alone in this ostomy world! My son was born in May with many defects that will require permanent colostomy (he has a teeny bit of a large intestine as his ostomy). His stools are very liquid as yet. We use Hollister products and change his bag every other day (or as needed). I use a large spout drainable bag and part of a hollister barrier ring around the opening... putting it all together as 1 unit before putting in on him. Our biggest challenge has been to find the 'perfect' ostomy bag! It doesn't exist! Best of luck to you.

Anonymous said...

hello- I am thankful to you for putting this information on the web. I am 32 yrs. old and just had to get the ileostomy. I had the surgery just last week and I have to keep it forever. Your page was more helpful than the hospital. Thank you, Cheyanne

Tami's Eclectic Corner said...

Thank you, thank you, thank you!! This info is awesome. We just brought our 2 1/2 year old home today with an ostomy. He is our second child diagnosed with Hirschsprung's Disease. Our other son is doing so well now! He had his colostomy placed at 3 days old and had his pull-through surgery at 8 months old. He's 8 now. I'm a bit rusty on the whole bag changing thing. This info is awesome! Thank you!!

Kel said...

We've changed to a new bag and wafer than what was originally posted. Now that Bridgette is almost 8 months and has a bigger body and thicker stool we use -- Convatec Little Ones Bag REF: 411637 and Convatec Cut-to-Fit Wafer REF: 405457.

What hasn't changed is making sure her skin is dry and powdered and the wonderful use of stomahesive and heat to make a good seal.

kt said...

Thank you for your suggestions. Our 3 week old son just had a colostomy and we are having a heck of a time getting any bags to stay put. right now we are changing the whole appliance (wafer, bag etc) almost every diaper change. we are currently using all coloplast product but i have requested sampled from hollister and convetec. we have started using your hairdryer technique and it keeps our son so much calmer while we work also dries the area nicely. our biggest obstacle is that the mucus fistula is so near the stoma that moisture seeps under the wafer and the seal is broken. we are at wits end! i just wanted to thank you for taking the time to to you and your family

Anonymous said...

Thank you somuch for our blog. It has helped us as we grapple with bags for our 5 week old daughter. We are still having issues with the bags leaking in the area close to the mucous fistula as well. We were wondering what type of waterproof tape you have used. Some tape seems like it is too strong and would be difficult to remove and other don't stop the leaks. Thank you for any ideas--Juliet's parents.

Jeff Johnson said...

We use this surgical tape: EdgePark

Also, we have found that the stoma-paste is important in helping the wafer seal. It sure is tought for the first few months, but as your baby gets a little bigger, things get easier. Hang in there! :)

Kel said...

Bridgette has a double-barreled stoma and not a loop ostomy, so the two ends of hers are located immediately next to each other. We cut the wafer so that it goes around both.

If the mucous fistula is close enough to the stoma, I would suggest doing the same thing, but if they are far apart, I'm afraid we don't have any experience with that. Maybe you could cut a notch out of the side of the wafer? to go around the fistula so that no mucous gets underneath? And hopefully as your baby grows the area between stoma and fistula will widen.

Anonymous said...

Thanks you both for the ideas and for teh quick response. We will keep working on it and get some of the tape. Her incision between the stoma and the fistula isn't flat so the leaks tend to be caused by the ridge that comes up when she moves. Thanks for the the ideas and for the blog. It has been very helpful-especially the heating/hairdryer technique. I'm sure we will have more questions as we go along and as she gets bigger. Nicole--Juliet's mom.

Kel said...

The uneven incision site was a real problem for us as well. Initially her stoma was herniated also, and between the two, it was very difficult to keep a wafer sealed to her skin. Fortunately, both get better with time as the site heals.

We know what it's like to cry, exhausted, over bag changes 3 and 4 (and 6 and 7) times a day. It really does get easier. Good luck!

Anonymous said...

So great to hear others stories with infants who have Hirschsprungs disease, and also an Illiostemy! I have a 7 month old son who has had the ostemy since he was 2 weeks old, and we had gone through all of the same problems everyone is speaking about... one thing we are facing right now is the gas building up in the bag at night... i noticed you said you were now using bigger bags with a gas vent... can you give me the information about the bag? What the product number and name brand are? We are having terrible trouble with the bag we are using, filling up too quickly with gas, and he is unable to pass more gas during the night, which is not allowing him to sleep, and also very uncomfortable. Thank you for all of your help it was great reading this post! Alyssa

Kel said...

Hi Alyssa! I'm sorry I didn't see your post until now! If it's still helpful to you, here are the supplies we switched to -- Convatec Little Ones Bag REF: 411637 and Convatec Cut-to-Fit Wafer REF: 405457

We had the same problem with gas filling at night. Even though the new bags had a gas vent (with charcoal that is supposed to help with the smell) we found it got clogged, so it wasn't a perfect solution. In fact, Bridgette is almost 4 years old now, and gas is still one of our biggest problems. She has to hold it all in to keep control of the rest of her bowels. Potty training has been a process, and for whatever reason, her intestines release a ton of gas at night especially. It's funny what you don't think about until you're faced with it. I wish you luck! If you find a better solution/bag, please post it here and let everyone know!

Unknown said...

I just wanted to say thanks for posting your experiences. I was searching ileostomy bag information. And merely i got relrvent information in this blog.