4 year old with a new ostomy and problems finding the right bag! Help!

Welcome! You have come to the right place for patient and parent perspectives. There are some people on this forum who have children your son's age with ileos, and I hope they will be along to help more specifically.

First, the filters don't work on ileos, so just accept that..... they are more for people w/colosotomies, the ileo output is too thin and it clogs them. The convatec filters sometimes leak and some people cover them up with tape to prevent that. You shouldn't smell anything.

For bathing, you might want to try a product called sure seals from active lifestyle products (I get them through edgepark). This is a clear tape that goes over the outside of the wafer and holds it down. It's waterproof and can contain leaks. I use them for confidence in swimming and bathing (and learned of them here).

You can cut the wafers, but of course, not so much that they won't stick. A good nurse can really help w/this.

I use coloplast, and they have pediatric products too. It's a much more flexible wafer than the convatec ones (I didn't like the stiffness there), and that might work better for him.

Also, when the ileo is new, it changes size a lot, so be sure to measure at least once a week if you're using something you need to cut.

Are you using any other products, e.g. powder, paste etc? If you post details of your routine, we may be able to identify places where you're contributing to the pouch not sticking as well, sometimes there are little tweaks -- e.g. don't use baby wipes to wash the skin, as they have oil that can interfere, make sure adhesive remover is washed off w/soap or it will degrade the next wafer, don't use too much powder etc.

It's a big learning curve, but a lot of us have worked things out.... feel free to keep asking questions.

Ok, details. I use a barrier wipe and let that dry first. I apply that stoma paste to the inner circle of the hole in the wafer (that I measure and cut to size each time). Let that sit for a minute. Inside the bag I put the Adapt lubricating drops and odor control drops and then apply the bag, holding it and pressing it gently for up to 2 minutes. That's about it. I will look up the coloplast products. I just asked for a month's supply of convatec because I am almost out of samples and need something but maybe they will let me change if I decide. Can you post a link to the tape seal you mentioned?

Thanks for the reply!

can you get in to see an ostomy nurse?

also CALL the manufacturers directly. Ask for samples pediatric appliances- coloplast, hollister, convactec are the three major ones. I have found the people on the phones are ALWAYS extremely helpful.

I would be careful about sureseals on a youngsters skin. You can try MEFIX tape to frame around the wafer edges before bathing. Or you can use it when you think an edge on the wafer is pulling up with a crease. You can cut it as you need. It is very good for extremely sensitive skin.

The barrier wipe should be used after the powder. If you are trying to put a wafer straight onto the powder- almost nothing will stick. So clean him up, only plain water or dial soap, dry him very very thoroughly, apply powder only to an area if you think it is irritated. If not, skip the powder. If you have powdered, blow off the excess powder, and then dab the powdered area with the barrier wipe. Are you using paste or a something like an seal or hollister ring with the wafer? If not, that may also be the problem.

Once you have applied the appliance, rather than just holding it down and trying to heat it with your hand, have your little boy lay completely still and gently hair dryer the outer areas of the appliance. Keep him in "flat" position - no twisting or bending for about 30minutes after putting on the appliance. For me I change standing up - but just don't twist or bend of half an hour afterward.

Oh and I have found Hollister M9 drops are far more effective at odor control than the adapt lubricating stuff. You have to use a lot more than a few drops though.
good luck. let us know if you have more questions.

Sorry, my mistake on assuming he had an ileo, I think I just read "ostomy" as "ileostomy," will be more careful about that in the future. Colostomies smell a lot more than ileos, so that makes sense too.

Here is a link for the sure seals: http://www.alpglobal.com/. I don't know if they are a problem on young skin or not, you could test a little piece somewhere else on his belly. It's the same material as the tegaderm used to hold down IV's (looks like sticky saran wrap). Some people do have skin issues w/it (I have some in the summer), but that is true for many adhesives.

here is a random link just to show coloplast pediatric pouches: http://www.continentostomystore.com/Merchant2/merchant.mvc?Screen=PROD&Product_Code=COL14691-14692&Category_Code=COLASSPED2

ddd has good points about the powder and the barrier wipe. That could be a very big issue. You might try using an eakin seal or adapt ring instead of the paste. These are sticky rings that go around the stoma -- you can put them on the skin first or on the wafer first..... if they are too big for him, you can just use a part of one and stretch or roll it into the shape you want.

I can see it being hard to keep a 4 year old flat for a half hour.... even a little bit of heat can help, after putting on the wafer though...

Do you have an ostomy nurse (WOCN or ET)? A good one can make a huge difference. If you're having home nurses, they usually aren't ostomy nurses, and they don't always know what they're talking about regarding ostomies.

Hang in!

THanks everyone! We are not using a powder at all. I did call Convatec today and they have another wafer for me to try and that is more flexible, she was very helpful. Unfortunately his surgery and his nurse are 4.5 hours away...the home health nurse they sent was, well....unhelpful to put it nicely so she will not be coming back. We have horrible medical care where I live. :( I will check that site posted above for a WOC local nurse, if nothing else just to have another contact. Today when I changed the bag (not even 48 hours again) there was poop leakage all around. :( SO FRUSTRATED! I am using the paste. I tried the eakin seal but didn't feel like I Could mush it together small enough to be snug around the stoma.

Am I able to post pics here?

You can't actually post pictures on Healing Well, but there's a site we use to post pictures, mostly to see what we look like. Here's the info:

photobucket.com
Login: crohnsdisease
Password: 6mp3asa

I agree w/everything ddd said, not much else to add.

Very sorry your medical care is so bad..... I live in a medical mecca kind of place, and it's been eye opening being on this forum and learning about the disparities.... but happy to share anything my good ostomy nurse has taught me, and it really is a learning curve for all of us, and you will work it out.

No nurses in my area according to the sites up there. :( I will change the bag again tomorrow and try the eakin seal thing like someone explained. I wish there was someone that could help me!

Still on the hunt over here for the right fit. Quite frustrating. :( Saw the ostomy nurse and she saw what was happening first hand. I swear his poop is totally dissolving EVERYTHING with the Hollister brand!!! It's so weird. I have tried with eakin seal and with the paste. Same thing both times. Now I am back to Convatec and trying this moldable ring seal by Coloplast with it and this is a smaller coupling, more flexible than their other that I tried. I hope this works. I need to get this figured out. His next surgery is Thursday this next week....we leave Wednesday. Ack!!!!!

We are in deep south Texas near the mexican border. I haven't looked up videos, I can try that. I have yet to see anyone else with our issue through my searching. Argh~!!!!!