Help with Neonatal Ostomy

Hello,

I'm not sure if this is the right place to ask, but I figure I'd shoot my shot:

My son was born January 10th, 2024, with an imperforated anus. He's finally left the NICU and is with my wife and me at home. We are adjusting to life at home, but we are having a really rough time keeping his colostomy bag in place. His bags never last between feedings. We keep his fistula covered with a bandage and Xeroform, but when he moves, it rubs up against his pouch and tends to dislodge his pouch. He's only three weeks old, and the changes cause him immense discomfort. Any suggestions?

We have a Hollister two-piece (skin piece and bag). When setting him up, we do the following:
1. Remove his old bag
2. Clean off any stool around his body
3. Dry the area (using some disposable sheets and now also using a hair dryer. He likes the hair dryer)
4. Add Cavilon barrier film
5. Apply his premade patch and bag (We've been cutting his patch in different ways to try to accommodate his fistula)
6. Press a warmed rice-filled sock against his stoma.

Have they not arranged home help for you? You should have a nurse calling regularly, not just to change the bag but to show you the correct way to change it. You keep saying fistula, do you mean stoma, the part that sticks out from his tummy? I hope you can get some help. Regards, IGGIE

It sounds like your sweet baby is dealing with a challenging situation. Sending hugs to you all! Your surgical team, hospitalist, or whoever is providing follow-up care for your baby is who I would ask about seeing a WOCN who is specialized in pediatric ostomies. Iggie's recommendation about home health is also great.

Coloplast UK has a good PDF about neonatal stoma care. Content warning: there are a lot of medical pictures.

Babies have thin skin and ostomy pouches do not adhere well. The ideal wear time is 24 hours.

1. A pediatric 1-piece Hollister pouch may be helpful. 1-piece pouches tend to follow the movement of the person wearing them. You can get free samples from the Hollister website. Securing a diaper/onesie around the pouch can help keep everything in place.
2. Are you cutting the pouch opening to 1/8th inch larger than the stoma? This can help with adhesion.
3. What are you using to cleanse the skin at pouch changes? I ask because a lot of baby wipes (and Xeroform) interfere with pouch adhesion. Better to clean with water.
4. Is the skin around the stoma dry or red and weepy? If the skin is red/weepy, then the pouch is going to have a hard time sticking. A light dusting of stoma powder before the Cavilon can help.

Hi! You've gotten some good advice so far ☺️ What type of bandages are you using? Speaking as an adult who has sensitive skin, we ended up using the pink silicone made for NICU babies when I still had an open wound, then I found I could also use the blue silicone tape over time. When you say the changes cause him discomfort… a lot of babies get ticked during any type of change whether it's an outfit or diaper, so some of it may be that. My son was born with three different heart issues, and it sucked as a parent holding him through different tests that he hated. Y'all are going to be pros at ostomy changes soon. Do you have a good local support system?

Much respect to you and your wife, you'll have your hands full for a while. Do you use a barrier ring for additional stickiness? Do you use adhesive remover or are you just peeling the bag off?

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

You are definitely in the right place.

As a young couple dealing with a newborn having a stoma, we will act as his online aunties, uncles, and grandparents. 🥰

I cannot advise any more than what's already been said. 👍

You've got your work cut out for you, but we can lend a helping hand. Don't feel like your hands are tied. Ask anything.

The mamas and papas here know their stomas. 🤗

Two things are a must: terminology

and posting.

The former means your son likely has a stoma, not a fistula. Whoever told you it was a fistula, I will sic the A-team on them. 🤬

The latter means timely replying. A timely reply would ease our minds since we can't be there holding your hand.

It's a two-way street. Give and get more.

Wishing you patience, blessings, and the know-how you seek, timely and properly, accurately.

Ivromero19, we all hope you and your baby are doing better today 🙂

WOCN and ileostomate here. Sometimes babies end up with two surgically created stomas, sometimes as an ileostomy and a mucous fistula connected to the anus. The two stomas are made to prevent post-operative complications. Older people sometimes need two stomas, but it's less common.

Maybe it is a fistula wound? Ivromero19 talks about dressing it with Xeroform and a bandage. Xeroform is an antibacterial impregnated petroleum gauze. Honestly, I'm puzzled by putting Xeroform over a mucous fistula so maybe it is a fistula wound?

Ohhh. You had me at

impregnated petroleum. 😆

Hi folks, sorry for the late reply. Had a follow-up with pediatrics and spent most of the day running around. We've been home from the hospital together for only the past two days, so catching up on prepping for him and adjusting the sleeping little as new parents. I appreciate everyone's input and I'll try to respond to everything in order.

Some background on my son:
He was born with an imperforated anus and so he had the colostomy added. Since he's so small, it's too early to try to do a reversal, but we're hopeful that by the end of the year they can make the effort. Ultimately, we're just grateful he's good. He's otherwise healthy, patient, and has been strong throughout everything he's been through. We are incredibly proud of him.

Thank you IGGIE! - As MBT mentioned, my son has two surgically created stomas. The terminology we've been using is:
Fistula - Mucus fistula. His surgeon asked to keep his mucus fistula outside of his pouch and to keep it moisturized. Hence the Xeroform.
Stoma - Where his stool comes out of
We did have training with different ICU nurses as well as a wound team that walked us through care. Even then, we noticed that the seals were not adhering well in the NICU either. He's only been able to eat food for the past week (he was on IV for his first two weeks).

His stoma is something like the following: https://img.medscapestatic.com/pi/meds/ckb/83/43883.jpg
but without the vesicostomy and his stoma is much smaller (roughly 15 mm).

We've been using a Hollister 3778 Pouchkins. The pouch itself adheres to the skin barrier really well, but it's between his stomach and his skin barrier that we get lifting. We put the order in for samples for everything pediatrics yesterday. Hoping to try a few different products and see if anything can stick better.

We've been making the stoma cutout slightly larger than his stoma; we thought we had to always have a close to snug fit.

crappycolondiaries - My heart goes out to you. I hope your son is doing better and that your struggles are past you. We were only in the NICU for a few weeks and I know how hard it was. We have friends, family, and even neighbors who are now friends that have reached out and been supportive. We are lucky to come across kind people. I had poured over a few different forums and we are using Hypafix tape to add additional support around the skin barrier. We tape around the edges of the skin barrier, which seemed to be helping. We had a pouch that lasted maybe 8 hours and we were over the moon.

AlexT - Thank you! In the beginning, we were always using the adhesive remover, but once the seal is compromised, most of it peels away with a gentle tug. After the site is cleaned with water wipes and dried, we add "Cavilon - No sting barrier film." We dry the site again, then add the skin seal (which at this point has the pouch on it). Once the seal and pouch are in place, we use heel warmers to help with the adhesion. The nurses did give us some rings, but we haven't experimented with them yet.

warrior - Thanks and sorry for the delays. We're still adjusting to the parenting routine and it's easiest to respond at night when we wind down. Though I know I'm going to have more delayed responses starting Monday. We have family that is coming in to give us some local support, but I have to go back to work and I'll be trying to juggle more things. I'll still try to provide updates when possible. The biggest thing is that we are getting better. My wife and I are becoming really good at coordinating and working together doing changes, so our son doesn't have to be uncomfortable for as long.

MBT - Huh. I was always told it was a mucous fistula. We'll try to reach out to pediatrics or his surgeon tomorrow to make sure we are giving him his proper care. I'd understood that the Xeroform was so that it stayed moist. I think you raise a really good question.

I realized I missed answering some of these questions:
1. We are currently using Pouchkins 3778 - it's the skin seal we have the biggest struggle with, since that tends to lift.
2. I don't think I can add 1/8" size to his pouch opening, but I'll try to extend the opening further as much as possible. If we make the opening too big, the skin seal starts to cover his mucus fistula. (We've been following the ellipse in the skin seal that says "Do not cut outside this line.")
3. We use water wet wipes. We were using saline wipes at first, but weren't sure if they were making a positive difference. My biggest concern is that the Xeroform covering his mucus fistula is eroding the adhesion. I just don't know what to do about that.
4. The skin has a pinkish color to it, but I wouldn't call it red. We started adding stoma powder before the Cavilon just to make sure we didn't bother his skin too much since we are changing the seal so frequently.

It's showing 3:30 a.m. by your last post.

How exhausted you must be...

Please don't feel anxious for a quick need to reply.

Your replies have uniquely gone above and beyond the request for more info.

Thank you. Blessings. You got this, obviously. Write when you can.

I am done. Others will be chiming in... "We have a baby in our midst"... our first. Thank you again.

The water wet wipes brand has grapefruit in it... might be irritating? Did they mention not using wipes because of the ingredients that can make sticking a problem? What did they use in the NICU for cleaning the area?

Mucous fistula made the most sense. Never heard of putting Xeroform over a mucous fistula, but I realize I haven't seen everything! Usually, mucous fistulas keep themselves moist and do not need a moist dressing. It is curious.

I see which pouch you are using. There is not much space for anything. I thought we were talking about a different Pouchkins. All the gold stars for achieving 8 hours, and I hope you all get some rest today.

Warrior, I've seen that exact phrase on the package too many times 🤣

Hey, umm, the baby in our midst comment you mean? I just made that up. I surprise myself like that, and other times I'm dumb as a brick.

Wasn't there a movie

Gorillas in the Mist (the brick talking now) 🤗

There is fruit extract in the wipes, I did not know! Switching over to a wet cloth for his cleaning, going to see how that works.

Routine will look like:
Prep:
1. Prep seal and pouch. Make seal with about 1mm on each side for wiggle room. Any further and we start to eat into adhesion at the edge of the seal or rub up against his mucous fistula.
2. We had been doing a feeding before applying the seal. The feedings were nice because he was much calmer throughout the process. He'd also release stool mid-change which I think added moisture and caused the bag to loosen earlier. Aiming to make the change in between feedings to prevent mid-change poops.
3. Depending on how loose the bag is, we will use adhesive remover or gently peel the patch and tape away.

Application:
1. Clean up the site with a clean, warm, wet cloth.
2. Use a blow dryer to dry the area further.
3. Apply skin barrier.
4. Use blow dryer again.
5. Add a light coating of stoma powder.
6. Apply Covaline skin barrier.
7. Apply the skin seal + attached pouch.
8. Press a warm sock filled with rice against his skin seal.
9. Apply Hypafix tape around the edges of the seal.
10. Soothe my son and tell him he did a great job.

How does that process sound? Some questions I still had and wondered from your folks' experience:
1. How important is it to use the adhesion remover? If not used, will that cause problems binding the next seal?
2. Should we use saline wipes over water wipes?

FYI, I'm going to change my username very soon. Going to move it to something like "PapaLearningRopes." Sorry if this causes any confusion.

P.LR.. Papa Learning Ropes sounds and looks good to me. Got my vote. 👍

Does he have irritated skin? If not, I'm not sure why you're using the barrier wipe/spray, whichever it is. Also, you don't need stoma powder if there's no irritation. Using a hairdryer on his skin can dry his skin out. I get you're using it to speed up the process, but a regular fan of some sort may be better than using warm air. You don't need to use adhesive remover if you don't want to; it just makes it way easier to remove the sticky stuff. Just make sure you rinse/clean/dry the area well before applying his new stuff. If you're gonna use wipes to clean the area, use only the water wipes.

PapaLearningRopes, you're doing amazing 👏 Sending hugs

Like others said, the stoma powder is only needed if your baby's skin is getting irritated, red, or weepy.

Babies have a skin outer layer that is only a few cells thick and really need alcohol-free adhesive remover to prevent tearing their skin.

Also, a rice bag can get a hot spot and burn the stoma or skin nearby. A baby blanket from the dryer or a hair dryer on cool is less likely to burn the stoma.

Folks, you are amazing. I'll run this through with my wife and update our process. We thought we always had to add the powder and barrier. We will start keeping an eye out for irritated skin and apply only then. Also, we weren't aware of the thin skin layer. We are going to make sure we always apply the adhesive remover. Thank you so very much.

We live in an apartment complex, so access to a dryer is limited. But maybe what we can do is apply the blow dryer to a blanket and then apply the warmed blanket to him after.

We will try to apply these updates to his next pouch change. For now, both mom and he are knocked out with some well-deserved sleep. You folks have given us a much clearer view on how to use our materials.

Use the hair dryer on low for a few seconds on the sticky part before applying the bag/sticky part to warm it up. Once it's stuck on, use the dryer again to warm it for a few seconds, then put your hand over it with pressure to allow the sticky stuff to adhere and set up. I hold my bag on for up to 5 minutes. You mentioned that sometimes he has output before getting the bag on; it's very important to get that cleaned off and the skin dry before applying his bag.

MBT, what do you think about a baby blanket (receiving blanket-like) wrapped in a heating pad first to warm up?

My friend's son was born with Hirschsprung's disease (I can't remember at the moment how many years he had a colostomy for, but she used something like this to keep supplies organized.

https://a.co/d/epUetpt

I ended up riffing a bit on the last change. Skipped the hair dryer entirely. Instead, I took the hot sock and applied it to one of his burping cloths. The cloth is thick enough that it trapped heat well, but not well enough that it was "hot." Then we pressed down the cloth against his seal once it was applied. We held on for about 2 minutes, but off your message, going to bump it up to 5.

If we fed him beforehand, he was way more calm during the change. It also meant that he would have a bowel movement almost immediately after we applied the seal. I figured this might be breaking down the adhesive from inside, so now we are trying to change far apart from feedings.

I like the suggestion of applying the dryer to the sticky side of the seal. Would you recommend doing this with the plastic film on or off?

Again, thanks for your feedback!

:grin: Yes! We are finding that being organized is the way to go. What I started doing was making little "kits" of sandwich bags with everything he needs for his bag changes. They've been big time savers, especially at night when we aren't all there.

That would work! It looks like PapaLearning found a good alternative 😊 Like AlexT said, pressure and warmth are key.

It will get easier. You, your wife, and little man are figuring this out together, and he can't give you the stink eye over anything yet 😁 Y'all are doing great! Win for finding a way to make changes easier!

I use one-piece bags (so the wafer and bag are already together) and a barrier ring. I take the plastic film thingy off, put the barrier ring on my wafer part of the bag, warm all the sticky parts (wafer and barrier ring) with a hair dryer for maybe 20 seconds on low, then apply it to my stomach. I put my hand over it, apply pressure while running the hair dryer over my hand for a few seconds. Then, I go lie down for roughly 5 minutes while applying pressure from my hand over the whole thing. The hair dryer, for me, really makes all the sticky parts much more “flexible” and basically melts (not the right word but it's 2:00 am 😁) the whole thing to my stomach.

Incredible! His barrier ring is a little too large and interferes with his mucous fistula, but I love these instructions. I can at least apply the hair dryer to the sticky side of the wafer and see what improvement we get. Thank you for responding even at 2 a.m. I'm amped, these are really clear instructions. Thank you.