Our son has Hirschsprung disease that effects his entire colon.
At 4 days old, he had a ileostomy created to bypass his colon .

He is doing well, except for the leaks. His bag leaks about once every 2 days and always leaks in the same spot. Near his belly button.

We have to notch the wafer out because his stoma is so close to the belly button and this seems to be the problem.

Do they make a skin glue that helps hold the area better?

Anyone ever deal with such a problem?

Hi njcowboy,

First let me say how sorry I am to read this post. My heart goes out to you. I always think of Shell Worell as our ileo expert. She might have some ideas. Perhaps send her a private message. Best of luck.

I am so sorry to hear about your baby's problems. I have been wearing a preemie pouch (in addition to my adult ileostomy pouch) for several months now, to collect the drainage from an fistula. I, too, have to cut off part of the wafer since the fistula is so close to my stoma. The preemie pouches generally start to leak after a day, or a day and a half. Sometimes they last only a few hours if I am very active, or sweating, or take multiple showers. I spoke to the manufacturer of the Preemie Pouch. He said the pouches last only two days, possibly 2.5 days on a premature baby in the hospital, who does not move around much. He also stressed how important it is to use heat and pressure on the wafer after applying it to help give a good seal.

I find the problem is the wafer seems to turn into goo when exposed to liquid. It doesn't stand up to drainage as well as the adult wafers do.

I got some samples from Hollister and Convatec of other infant pouches. The one-piece Convatec seemed to last a little longer for me. You might want to request samples of other brands to see if any of them give you any longer wear time.

Have you tried an Eakin seal under the wafer? I sometimes get a little longer wear time by using a bit of an Eakin seal around the hole in the wafer. If I use too much, it seems to backfire, though, so use only a tiny amount, and really flatten it out.

I hope you can find a system that works for your baby.

Anjuli

Cataja and anjuli, please don't feel sorry for us. There are alot of medical conditions that he could have been diagnosed with that are MUCH worse.

Anjuli,
I have tried the stomahesive but it does seem like it back fires.

I like the hollister bag that we are using because the bag can be drained with a syringe

We have a home care nurse coming in tomorrow that might be able to offer some tips.

I'm glad you have a nurse coming to help you soon. He or she should be more familiar with newborn issues; I had not considered drainage difficulties with a baby.

I have found that Eakin seals, Adapt rings, and Coloplast strips don't "melt" as quickly as stoma paste, so you might want to give them a try.

Best of luck to you all!

Hi There,

I have a four year old with an ileostomy and I can tell you that trial and error will get you where you want to be. I ordered every catalog I could find and then samples from these to see what worked best for us. My sons wafers always buckled in the same spot so we tried many and it was not until we switched to taped edges that we found a good one. At this point we use adult bags b/c the pediatric ones were just to small. I understand this is not an option for you yet. Here are a few things that come to mind that I have learned from our experience.
1. Heating the wafer with a hair dryer helps it adhere better, just make sure it’s not too hot.
2. stoma adhesive paste fills gaps but does not help wafer stick better. Probably just the opposite actually. We now use just a little powder around stoma and nothing else.
3. Generic original flavor Maalox/Mylanta is great for irritated skin (not caused by fungus etc..) Let it sit and then pour off as much of the clear liquid as you can. Put a little on with q-tip and let dry before placing wafer.
4. Alcohol is very irritating and my son eventually developed some type of allergy to it so now we can not use paste, regular remover wipes etc…We can use Alkare adhesive remover wipes though b/c they use a different form of alcohol.
5. Crib pads are your friend. They save a lot of hassle in the middle of the night. Even the best systems leak occasionally.
6. What works great for a while may stop working or your child may become allergic.
I swear it gets easier with time and soon changes will be a breeze. It’s hard on such delicate skin and some of the wafers that stick the best hurt the worst coming off. I have also found that being prepared is the best stress reliever. I have 3 “kits”. One in my diaper bag and one on each floor of the house so that I have everything I need right there. Scissors, bags, wipes, powder, a couple of appliances, soft cloths to dry skin, baby wipes etc… Sometimes I think we have more leaks than others just because my son is not always as aware of his appliance and he relies on me to check. As he gets older this has gotten better though.
Good luck!
Laura
(son ileostomy 12/06 due to IBD diagnosed (finally!) at 18 months old.

PS---Nu-Hope neonatal look interesting…we never tried these.

We don't get very many infants on this forum let alone newborns so not sure if the advice I have would be the same for the tender skin of such a tiny baby.

I think Anjuli's suggestion of using either eakin seals or similar is a good one. I never got on with them myself but a lot of people swear by them. It would certainly help fill in the dip by his belly button.

I was going to suggest Smith & Nephew's skin bond too but I'm not sure if that might be a bit harsh on your little one's skin.

I use Convatec's moldable wafers but have no idea if they are available in the paediatric sizes. Definately get in touch with some of the bigger ostomy manufacturers to see if they will supply you with some samples to try out. Ask also if they do Durahesive wafers for infants because they are much better suited to the high volume acidic output from an ileostomy than the normal Stomahesive wafers.

Do you use any skin prep such as no-sting Cavilon barrier spray or similar before applying the wafer? I use a no-sting barrier wipe and find that it actually helps my wafer to stick harder. Also, it helps to make sure his skin is squeaky clean and completely dry before applying a new wafer.

Hope this helps. Let us know what the home care nurse has to say when you have seen her tomorrow and give that precious little bundle a big cyber (((((((((cuddle))))))))))) from me.

P.S. I think Laura is by far the most qualified here to give you advice having dealt with this with her little boy. She just pipped me to the post with her reply.

Take care

Shell

Thanks guys and gals.
We do use a no sting barrier wipe and I have been fanning it dry applying the wafer. It does seem to help a little.

It will be trial and error for us, But I was hoping to by-pass some of the error part

well,
The newborn nurse was not much help. She showed us how to change the bag, which we have been doing already and her bag lasted 8 hours before leaking.

I am going to call Edgepark and try to get a few samples to try.

An Edgepark catalogue is useful, but you might have better luck asking the manufacturers directly for samples. You can go to their websites(Hollister, ConvaTec, Coloplast, etc.) for the phone numbers. I have found them very helpful, and you can ask to speak to a nurse for more detailed tips.

Anjuli

I dont have any advice for you, however I do go to this website/message board that is all about ostomies.. they have a section just for children with ostomies and those that have kids with them might have some advice for you. the site is http://ostomyland.com/ostomyboard/index.php

My wife and I feel for you. Our daughter had a complete colectomy at 26 mths old. She had her ileostomy done laproscopically which we were thrilled about, but her rectal stump is still quite diseased with UC. She uses Hollister 3770 and 3771 (Adult). We put on the barrier wipes and the Stomahesive paste. On average the appliances last 5-6 days, with the occasional leak. We also use the belt (It's a 2 piece). We no longer use a hair dryer to heat the flange (seemed to cause cracking after a few days).

Perhaps you can try turning it sideways, cutting it off center, there are ways to work with it. My sister in law was faced with the same. I always said I could not imagine a newborn ostomy change, diapers are hard enough/
I hope you can find a solution.

NJCowboy,

I was doing some research for a friend who’s son is about to have surgery and thought I would pass this info on to you.
If you go to uoaa.org you will find lots of info on ostomies.
Click on ostomy info
Then scroll down to find a link to suppliers
You can browse all of the manufacturers and especially look at their accessories for adhesive if you are still looking for some. If you go to torbot and click on free samples they are offering one for “skin Tac” which we have never used but it says it is good for sensitive skin. Most other suppliers will mail you free samples as well. I have also found a lot of them to be very helpful on the phone. Some staff ostomy nurses.
By the way we are on the East Coast as well and had surgery at A.I.
Hope things are getting better for you guys.

Laura (son 4 IBD ileostomy 12/06)

I know just what your going through. my daughter had her ostomy surgery when she was only hours old. We went through a lot before we found a system that worked. We finally found a system by convatec thats called little ones. We found that a two piece system worked best. this system has a waffer that is 3 in.x 3 in. it has tape around the outside. also