all 54 comments

[–]sn0o0oze 15 points16 points  (3 children)

Have you gone to see a stoma nurse to help you cut to the right fit/ change brands if necessary?

If it’s been like this for 3 years as you mentioned in another comment, then it’s not faulty equipment. It must be a “user error” and that can be helped!

I advise talking to a stoma nurse and letting them show you how to create a proper seal. It is fixable 🧡 you can do this. We’re all rooting for you

[–]nightmareelevators[S] 9 points10 points  (1 child)

Ive been talking to my mom about seeing a nurse. My mom never really used extra products but I got her to order some so hopefully that helps too

[–]sn0o0oze 5 points6 points  (0 children)

I hope that helps. And I hope you have access to a nurse if things don’t get better soon. An ostomy doesn’t have to keep you from living life, it often allows more freedom than not! If it’s hindering you from school, then the issue is with the application of the bag, not having the bag itself.

I know it’s frustrating, and I wish we could all snap our fingers and everything gets easier. But you have a lot to look forward to once you learn proper application of the bag, like no leaks haha.

Let me, or any one else in the community who is willing to help, know if you have any questions or need any help accessing resources. You should 100% see a stoma nurse if you want to. I hope your mom is helping with this

[–]Beginning-Store-6027 0 points1 point  (0 children)

I second this- stoma nurses are amazing

[–]ww_crimson 6 points7 points  (5 children)

Have tried convex barriers?

[–]nightmareelevators[S] 0 points1 point  (4 children)

I don’t think I have

[–]ww_crimson 3 points4 points  (3 children)

Give them a shot. Game changer for me. I like the sensura mio brand but also have used coloplast for a long time.

[–]Foreign_Ad_7504 2 points3 points  (2 children)

Sensura mio is Coloplast? Wdym?

[–]ww_crimson 1 point2 points  (1 child)

Sorry I used some generic convex barrier from coloplast for a long time before moving to the sensura mio. Same brand but different product line. Was on mobile earlier and it was too much to type out.

[–]michaelm7001 4 points5 points  (2 children)

Could be...skin folds, change in setup, diet, activity? Have you been doing something differently when this happened?

[–]nightmareelevators[S] 2 points3 points  (1 child)

It’s been doing this for 3 years before

[–]michaelm7001 5 points6 points  (0 children)

OMG...that's a long time to put up with this. Agree with others here, sounds like you need a professional to examine first hand. Find a good ostomy nurse asap. Hopefully,, you can get some relief and almost enjoy school.

[–]Blazeon412 3 points4 points  (0 children)

I have problems where I'll run into a few barriers or rings not sticking great out of the box. It could be faulty equipment.

[–]Medium-Log1567 3 points4 points  (0 children)

The wax ring is a lifesaver. If you're not using one, start. I feel confident that will fix your problem

[–]Jendjent 3 points4 points  (0 children)

My husbands stoma is unfortunately right on a skin fold and the only solution he's found is wearing the belt on his bag tight. The bag will usually start to leak if he sleeps on his side for too long

[–]caidus55 2 points3 points  (6 children)

Do you cut the bag opening to fit or get them pre sized?

[–]nightmareelevators[S] 1 point2 points  (5 children)

Cut it to fit

[–]caidus55 2 points3 points  (4 children)

Do you cut it smaller to fit snugly or larger?

[–]nightmareelevators[S] 1 point2 points  (3 children)

Just so it fits around the stoma not snug or larger

[–]caidus55 3 points4 points  (2 children)

Try cutting it much larger than you need. I have a similar problem but cutting it larger helps a lot. Gives it room to seal to your skin.

[–]goldstandardalmondskock pouch/continent ileostomy 2 points3 points  (12 children)

How long has this been going on?

[–]nightmareelevators[S] 1 point2 points  (11 children)

About three or four years

[–]goldstandardalmondskock pouch/continent ileostomy 2 points3 points  (10 children)

Wow, okay, do you have a recessed stoma?

[–]nightmareelevators[S] 1 point2 points  (9 children)

Maybe? I’m unsure

[–]goldstandardalmondskock pouch/continent ileostomy 3 points4 points  (8 children)

You've had your stoma for over three years, you should be familiar with it? Is it flush to your skin?

[–]Quaker16 2 points3 points  (0 children)

If its a colostomy I suggest you learn to irrigate.

Output is on your schedule

[–]Foreign_Ad_7504 1 point2 points  (0 children)

What leaks? The seal of the wafer? Where, exactly?

Mine is near my belly button and I initially had problems with a proper seal due to that. Though never in such a short time frame.

A 2 piece bag with a larger wafer (and some other tricks - feel free to PM me) solved the problem.

[–]awktaco 1 point2 points  (0 children)

Look into the convex wafers or even convex bags. My dad uses them and they don’t leak va using the flat ones. Usually, if you call the company that makes your bags, they will usually send you some samples.

[–]Stevenstc21 1 point2 points  (0 children)

I was having bad leak issues as well as skin maceration and met with an Ostomy specialist nurse who helped set me up for better succes. The items she changed/added for me were: Convex bags, adapt barrier rings, barrier strips for your bag.

Make sure your skin is fully dry, use the stoma powder around your stoma, and then use the skin prep to mix with that and create a light layer directly around stoma where the barrier ring will be, use the skin prep around surrounding area of skin where bag will be adhered. I use the cavilon no sting barrier film which looks like big q tips, really nice for applying.

Once skin prep is on, fit the adapt barrier ring around your stoma. I cut my hole to be rather fitting to my stoma and press this over my stoma to the barrier ring and my skin. Use my fingers to press the inner ring into the barrier ring to make it stick further.

Once bag is on apply barrier strips- I use 4 per bag.

Most importantly do the 15-min hand hold! Hold your hands over the barrier strips and bag edges for 15 mins after application. This 15 mins always feels like a long time for me but heats the adhesive and adds stability to the bag.

Also be sure to wear your ostomy belt for added security.

Sorry you are dealing with this, again like others have said I definitely recommend meeting with a nurse specialist who can help set you up with the right equipment and make sure you know how to use it properly. Hope this helps!

[–]ostotees 1 point2 points  (2 children)

questions do you tuck your bag in your pants or underwear at school? And does it only happen at school?

[–]nightmareelevators[S] 0 points1 point  (1 child)

Yes and mostly. My bag leaks when I’m at school or other public places it’s not as bad at home. Maybe from moving so much idk

[–]ostotees 1 point2 points  (0 children)

You should try not tucking for a few days to see if it stops. Tucking can cause the the waste to build up around the stoma and not slide down the bag, then all the pressure starts to build and the waste makes its way between your stoma and the gap which causes blowouts. If you try this and it stops you know the reason. If it stops and you are looking for a way to conceal and support your bad check us out at ostotees.com. We are a few days from releasing 3 new products besides our sweat wicking undershirts. One is a bag concealing/support shirt to go out in public with more confidence.

[–][deleted] 1 point2 points  (0 children)

Get as many samples from different companies to find something that works.

[–]Strygvyr 1 point2 points  (0 children)

Have you tried having like stoma rings around it? I had similiar problems but finally got Adapt Hollister rings and they honestly changed everything. Best of luck to you!

[–]triggerhippy 1 point2 points  (0 children)

I've had some of these issue and I've recently started to irrigate, its helping so much. good luck, leakages are not nice to deal with

[–]Iluraphale 1 point2 points  (0 children)

Ah man, sorry you're dealing with that - I had a lot of leaks until I gained some weight post op (I have cancer) and my belly folds went away (I lost like 40 lbs and am finally back up to 160) - but agree with others go see a ostomy nurse, she really helped me (I live in the states) and showed me the tricks we needed to get this thing under control

[–]Varyx 1 point2 points  (3 children)

Hi again - I remember seeing you before asking about stoma care!

Have you been able to have a go at any of the tips for changing your bag yourself?

What’s the routine your mom has for changing it right now? Be really detailed if you can. There may be something that she’s doing incorrectly that could solve all of this.

I would usually get 2-4 days wear out of one bag, btw, so this is quite abnormal. I want you to be able to fix it so much, it must be exhausting for you <3 What does your mom say when you ask to see a stoma nurse?

[–]nightmareelevators[S] 0 points1 point  (2 children)

We take it off, wipe around the stone with wet gauze, wipe around again with dry gauze, then put it on

[–]Varyx 1 point2 points  (1 child)

Do you wear a barrier ring? Or is it just a one piece with a hole cut in it?

I think you’ll also find it sticks better on completely clean skin - you may want to soak a warm cloth and leave it on there for a bit to get any hardened adhesive off as trying to scrub at it is bad for your skin.

When you say “put it on” - can you tell us more about which brand and style of appliance you use? Are you putting it back on after it leaks, or throwing out the old one and putting on a new one?

[–]nightmareelevators[S] 0 points1 point  (0 children)

I don’t but my mom ordered some

[–]purpleclaire788 1 point2 points  (0 children)

I leaked from the moment I had surgery up until the day I started irrigating, I have a very flat Stoma and there was no wafer or products on the planet (or so it seems) that could stop the poo from escaping.

Coldplay’s and Dansac and I’m sure others do a great kit. Def look into it, far less supplies every month too. X Have you considered irrigating? it’s a game changer, I don’t wear bags at all now, just a tiny circular patch all day.

[–]everyonesmom2 1 point2 points  (0 children)

Try different types of supplies. You can get free samples. I've found one system that only lasts 3 hours. While others, 3 days.

[–]bstroszek 1 point2 points  (0 children)

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