Stopping Stoma Leaks: Seeking Advice and Sharing Experiences

Replies
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276
Rancher
Sep 28, 2024 10:19 pm

Hello again. Ileostomate here. Thanks for all the info so far and I have another question.

I always seem to have leaks just below my stoma. The skin is definitely softer down there. What I've noticed is my barrier ring always expands up and around my stoma and I think it then starts to leak around the bottom.

I started with Hollister 7805 ring. Tried the Brava barrier ring and now trying the Hollister 8805 ring. They all seem to turtleneck up around my stoma and then start to break down. The skin is also getting irritated. Still waiting for a Salts ring as suggested by fellow ostomates on here. Also, I have a stoma collar coming. But I will try the Salts barrier ring first.

I tried keeping my wafer close to the bottom of the stoma, but I think the ring lifts up the wafer after it expands and then leaks under it. I have a 2-piece Coloplast and when I remove the bag, this looks like what is happening because there is a space between the bottom of my stoma and the barrier ring.

One fellow on here puts a barrier ring on the inside and outside of the wafer. I might try that.

What are your thoughts on cutting the wafer to the exact size of the stoma and getting rid of the barrier ring? Will this make it worse? Because my output is fairly runny.

I did try the Convatec moldable wafer and that seemed to work well. I tried 2 sample bags (changed both at 3 days each) but really don't like how dirty the drain is. Also, I really like the Coloplast Mio bags.

I am also starting to heal and feel better, so my activity level is getting higher and I am getting active again.

Any help or advice is appreciated.

 

warrior
Sep 28, 2024 10:39 pm

Hi, it sounds like you have a very good understanding of what is going on with your leak.

A turtlenecking barrier ring. Never heard of that, but as you explained, it makes perfect sense.

Let me ask, you didn't mention it—do you wear a belt that attaches to that bag mount?

And the extender C strips... have you experienced them at all?

P.S. Never cut anything too close to the stoma. As you know, the stoma expands and contracts.

If the ring or appliance is too close, you will choke the stoma. You don't want that.

Oh, just had an image.

Ever see those shirts?

"DON'T EVER GIVE UP"

There's a duck, or goose, pelican maybe, trying to swallow a frog. The frog is almost completely inside the animal's mouth while his hand grabs the animal's throat. Wonder what happens next?

Don't choke your stoma😆!

Glad to hear you are recovering well. It takes time and patience.

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Beth22
Sep 29, 2024 12:47 am

Hi there,

Actually, you're supposed to cut your wafer to fit the size of your stoma. You don't want any gaps or skin showing; this will cause you to leak and eat away at your skin. And trust me, I know what people will say about the 1/8 of an inch, but I will tell you it's bull crap and shouldn't be done. It causes issues. Lol, my surgeon was so pissed when he heard about the 1/8 of an inch gap; his exact words were, "Absolutely not, do not do that." (which I don't anyway). It also says it right in your instructions for cutting your wafer. I have always thrown them away, but one day I was curious. Also, Hollister makes a slim barrier ring, product number 8815. I had issues with other barrier rings too. This one doesn't break down like that or overly swell. Hope that helps.

Rancher
Sep 29, 2024 12:53 am
Reply to warrior

Thanks, Warrior. Yeah, I do have a belt. A month after surgery, I had a follow-up with the stoma nurses. I was doing a few things wrong (like not pressing the wafer and ring down right around my stoma). After they checked me out, they replaced the bag, put the belt on, and cinched it up really tight. So I usually do this for about an hour and then loosen it up. I have been using a soft convex and just put on a lite convex.

How much bigger should I be cutting out my wafer? 1mm or 2mm?

When I cut out the wafer, it is usually less than 1mm around my stoma. Do you think that is too close?

Rancher
Sep 29, 2024 1:13 am
Reply to Beth22

Interesting about the wafer hole size. The barrier ring I just put on is the same as an 8815, just 4mm thick instead of 2mm. Hopefully, it helps with the skin irritation, but it looks like it is swelling and turtlenecking as well. I'll also try the 8815 as well.

I feel like grabbing a tube of silicone and putting a bead under my wafer. Just kidding, lol.

I also have the extender C strips but haven't used them. Coloplast wafer seems to adhere to my skin really well.

 

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warrior
Sep 29, 2024 2:08 am
Reply to Rancher

Hi, yes, there's a learning curve here and there. Beth mentioned not to have a gap. The 1/8 gap I was going to recommend simply because I was told there should be a gap, allowing expansion of the stoma.

Never heard of it being anything less than that size.

I use a formable wafer; my bag is precut. I stretch the ring to fit the bag opening, press it down, then apply everything as an assembly.

My belt is tight, 24/7, which keeps the bulge at bay for me. But I am finding the ring kind of flattens out because of the tightness.

I get 3 to 4 days of wear time. C strips are for breach of the ring. The way I see it, it contains a leak for time to address it at home. Life-saving idea, worn 24/7.

They saved my bed sheets a number of times. Those C strip extenders... some are allergic to the adhesives. Keep an eye on that coming.

Eventually, you will find what works best.

For me? A gap. A belt. C strips.

SenSura Mio 2 piece, 3-4 days wear.

Ha ha. Yeah, silicone RTV. That's gonna hurt, dude. 😵🥺

Rancher
Sep 29, 2024 2:51 am
Reply to warrior

Wow Warrior, just read your Bio.  Name suits you.  Good for you for staying in the fight.  37 years prednisone.  I have been on and off that stuff for 27 years, and hopefully no more.

Thanks for taking the time and helping this newbie out.

warrior
Sep 29, 2024 3:00 am
Reply to Rancher

Thank you. I thought the handle suited me somewhat. At this age, we don't give a sheet, and actually, we can physically hand it out.

Don't get me started on prednisone. Lucky you got off it. I will be on it for the rest of my life. I am at fault for some of that. Never realized the long-term effects when it was written right inside the drug package. 🤔🙇🤦‍♂️

We are here, dude. We keep what matters in sight.

Be well.

Beth22
Sep 29, 2024 3:40 am
Reply to Rancher

The wafer hole size makes a difference... How do you use your barrier ring? I put mine on the back of my wafer and I do use the 2 mm. Remember, the thicker the barrier ring, the higher the wafer will sit, and the less length of your stoma will be able to hang in the bag. Another factor too is where your stoma sits, if there are any rolls or deep creases, etc. And that's good you found a bag that sticks well; half the battle right there.

Rancher
Sep 29, 2024 4:45 am
Reply to Beth22

My stoma is tapered and sticks out between 1/2 to 3/4 of an inch. I have placed the barrier ring on both my body and the back of the wafer. Currently, I am placing it on my wafer, the same size as the hole.

Within a day, if I look at the barrier ring and stoma, it looks like the barrier ring has partially migrated inside and is pushing upwards around my stoma (turtlenecking). After 3 days, when I change it, the barrier ring around the bottom of my stoma looks like it is sagging, leaving a gap just below my stoma. Because the barrier ring is absorbing the effluent, it expands (pushes the wafer up), and the effluent then gets behind it, causing irritation of my skin.

That being said, I think this is what's happening. It's just odd that the barrier ring expands so much. Maybe I am cutting the wafer too small, and the stoma is pushing the wafer up too much over time?

Axl
Sep 29, 2024 6:29 am

Sounds like your barrier ring diameter is too small if it turtlenecks and there isn't enough of it left between the appliance and your skin. If the ring overlaps the stoma too much, mucus will get under it and cause a leak.

Bill
Sep 29, 2024 8:11 am

Hello Rancher.
Thank you for sharing your problem, which takes me back to the days when I experienced the same sort of thing with leaks/seepage at the bottom of my stoma and could not seem to fix it with any of the proprietary devices.
I also had the problem of the stuff on the barrier expanding at the top more than the bottom, which made the problem worse.
However, the fact that this happened made me think that the manufactured devices I was using did not take into account the curvature of my belly at this point.
It was then I started experimenting with DIY methods & devices.
One of the first things I did was to make my own baseplates. 
The earlier ones had two belts, one at the top and one at the bottom and it was quite noticeable that the bottom belt needed tightening more than the top one. This stopped the leakages but, after a while, it seemed to cause the expanding substance to lessen on the bottom and increase on the top, which only made things like they were. A new approach seemed necessary.
I began by dispensing with the barrier rings altogether and sticking my barrier plates directly onto my skin with prosthetic glue. This worked well but the plates were still flat and what they should have been was (a graded 10mm) thicker at the bottom than at the top and made to measure for my body.
It took me ages to find a solution that worked effectively but eventually, I found that the Coloplast assura irrigation press plates 12820 could be infilled and shaped to fit snuggly around the stoma. Plus, whilst they had a fitting for one belt, they could also be adapted to accommodate two belts for top and bottom security. I still used Salts stoma collars because they can  fit precisely around the stoma and offer added protection, even though I now know that this is not necessary (with my latest addition*).
The Salts collars have an even more expandable substance on their wafer, which I tend to use a couple of times until it gets pliable. I then remove it so that there is just the plastic which can be glued directly to my skin.
*Recently, I have been testing a new device that is made from a bubblebath bottle top and is conical in shape to fit my stoma snuggly so that the output never gets anywhere near the skin and simply goes into either the irrigation sleeve or the bag.
The 12820 is 80mm and designed as a ‘2 piece’ device. However, It could more accurately be described as a ‘3 piece’ device as it takes both the irrigation sleeve or the bag.
This DIY approach has resolved all my body shape and leakage problems, but it has made me realise that with all the many ‘tweaks’ I have had to make over many months, that these devices need to be made to fit the individual. It is for this reason that I feel that the use of 3D printers would be very useful for future developments in this field.
If it is of any use, some of my DIY  stuff can be seen in photos on my profile.
Please keep us informed if and when you find solutions.

Best wishes

Bill

 

Beth22
Sep 29, 2024 2:41 pm
Reply to Rancher

If you're cutting your wafer to the size of your stoma and not too tight where it's digging into your stoma, it's not too small. The barrier rings are designed to absorb, which will cause them to swell. The key is finding the one that doesn't cause issues for you personally. I would try the thinner ones and see how that works for you. When you put the barrier ring in the back of the wafer, are you pushing the barrier ring inside the hole you cut, or are you placing it with the hole you cut? Have you thought of trying a one-piece bag? I used to wear a two-piece and I had to switch to a one-piece because I wasn't getting a lasting seal with a two-piece where my stoma sits.

Rancher
Sep 29, 2024 3:39 pm
Reply to Beth22

Thanks, Beth. I really want to try the salts ring when it shows up. A couple of fellow ostomates on here really like them.

I have been putting my barrier ring on my wafer with the hole I cut. Sometimes I can see a slight sliver of the ring after applying (very small). After applying, I also press down on my wafer around the stoma and then apply the bag. Still, the ring doesn't show.

Maybe I should set the ring back slightly from the hole in the wafer so when it expands, it will go towards my stoma and not up around my stoma?

Interesting info about the 1-piece bag. I never thought about that.

Beth22
Sep 29, 2024 7:52 pm
Reply to Rancher

How long do you hold your wafer for? I hold mine for quite a while. I will warm up my wafer with a blow-dryer and then when I put it on, I make sure it's all down around my stoma and all other areas. Then I will hold each section for a while to make sure I have a good seal everywhere.

I wish Salts would ship to the US. I have been wanting to try them.

TerryLT
Sep 29, 2024 8:13 pm

As I started reading your post, I thought to suggest you try the Salts barrier rings, and then found that you are already waiting for them.  I have a feeling they will solve your problem.  I always cut mine exactly to the size of my stoma, with no gaps.  They have super good adhesive and give me a week or more wear time.  They are also slim and I've never had any 'turtlenecking' like you describe, but I did have that with previous barrier rings occasionally.

Terry

Rancher
Sep 29, 2024 11:12 pm

Yeah, I put the barrier ring under my armpit while getting ready.  Try to warm up the wafer in my hands, but looking back I usually get in a hurry and should warm it up more

Funny thing happened today.  Visited father-in-law in long term care at the hospital.   Found out one of the residents there was an old friend of the family.  I told him about my ostomy and he said he has had one for many years.  Nurse was changing it and he invited me to see how they put it on....

Nurse cut it 1/8" larger than stoma, warmed and put barrier ring on back of wafer and rolled a little bit around to the front of the wafer and then placed it on his stoma.  Not sure how often they change it, but his skin looked good.

I might give this a try and see how well it works.

warrior
Sep 30, 2024 12:09 am

Interesting you saw the stoma nurse leave a 1/8 gap. Did you ask your friend about that? Did it work for him through the years? It seems it does work for him, that gap.

Are you familiar with the adhesive spray removal by Coloplast? The can, 1.7 ounces, is 48 mm in diameter or 1 inch 3/8.

I slip my barrier ring over that as a template. My base plate flange is also 48 mm.

I slip the can with the ring on it through the flange. Perfect fit. And roll the ring around the flange. Using a piece of plastic between the can and ring, the roll ensures a tight fit.

I flip it over and press the diameter of both like a sandwich, securing a tight fit there too.

No armpits were used in the process (insert armpit fart).

Hair dryer on low a few minutes warms the assembly up.

Place around stoma then apply C strips, then the belt after "fingering pressure" around the circumference of the flange.

15 mins tops start to finish.

However, once the kracken (a.k.a stoma) is exposed, it tends to expand—balloon a bit. Total time suck waiting for it to shrink. It does, maybe adds ten more minutes to the whole event.

Rancher
Sep 30, 2024 2:04 am
Reply to warrior

This fella that I talked to is getting old. I doubt he knows how he does it. Probably why the nurse does it now.

Sorry, I can't picture what you are doing with your barrier. Sounds like you roll it? Sorry, not sure what's happening there.

warrior
Sep 30, 2024 11:27 am

Will send you an email about my way, but the takeaway from your viewing this old guy and his nurse is that the nurse used the 1/8" gap, which is debatable and a cause of concern if this gap causes leaks.

For me, it doesn't. But since I place the ring over the flange plate first, I'm guessing these days at the gap.

Just had a leak this morning. After 5 days of wear, I date my pouch with a marker. 5 days! That's a record for me. But ugh... messy results. I have never had that turtlenecking.

Everything peels off nicely with a spray remover.

Will send you something after work today. Have a good one.

Beth22
Sep 30, 2024 2:11 pm
Reply to Rancher

Yeah, I have heard that ostomy nurses leave a 1/8-inch gap; that's their go-to always. I had one ostomy try to do it to me, and I told her she was out of her mind and told her the million reasons why you don't do it. Needless to say, she was dumbfounded and couldn't come back with a response. The point is, you don't want to leave a gap; you're leaving your skin exposed, and the output will get on it. Trust me, when your skin gets eaten away by output, it hurts, and it's raw and burns.

Rancher
Sep 30, 2024 3:02 pm
Reply to Beth22

Yeah I hear you.  I won't cut it that far back, but going to try giving my stoma a little more wiggle room.

infinitycastle52777
Sep 30, 2024 8:04 pm

I put my barrier ring onto my wafer instead of around my stoma. It works better for me as far as stopping leaks. I cut my wafer, then stretch the ring to fit the circle and not overlap it, then I press it down to the wafer around the edge of the ring. Then I put the wafer on and press the wafer down to my skin. I hold the press on top of the ring (through the wafer) for 30 seconds and then on the bottom of the ring (through the wafer) for 30 seconds. This works for me.

TerryLT
Sep 30, 2024 8:56 pm
Reply to Rancher

One thing I meant to mention, when it comes to cutting the hole of your wafer, you really don't need to be as precise, and can leave some extra space, IF you are using a barrier ring, particularly a Salts, because it will fill in the gaps and won't leak.  You can strangle your stoma from cutting the wafer/flange hole too tight, but don't need worry about that with the barrier ring.  It is more giving and malleable.

Terry

Rancher
Sep 30, 2024 10:07 pm
Reply to infinitycastle52777

Hi infinity. How much bigger is your wafer than stoma? Because I am starting to think this might be a problem for me.

I also tried cutting my wafer bigger this morning during a bag change. I put the ring on the wafer and then onto my body. Made sure everything was preheated well. There was probably a good 2mm gap of skin showing above my stoma. It kind of made me wonder what's going to happen. But I put the wafer closer to my stoma below. Got all my fingers and toes crossed. We will see what will happen.

Thanks

Beth22
Sep 30, 2024 10:30 pm

I've been cutting my wafer to the size of my stoma since day one; it hasn't strangled my stoma. I make it to the size of the base of the stoma and make sure there are no gaps. Not overly tight where it digs into your stoma—you don't want that, just to the size of your stoma. You don't want your skin eating away; that causes issues with your bag adhering and hurts pretty bad. Actually, the barrier ring can strangulate the stoma; it happened to me 2 times. I had to hurry and take it off the first time after a stoma nurse put it on; it was cutting off blood circulation to the stoma, and my stoma was changing colors. As soon as I took it off, it went back to normal, and the second time, it put me in the hospital for 3 days.

Rancher
Sep 30, 2024 10:46 pm
Reply to Beth22

Hi Beth. What size is your stoma? Does it come straight out of your body? Mine sits out between 1/2 to 3/4 of an inch, but it starts to taper right away after it comes out of my skin. Which is why I am starting to think why the barrier ring comes out and starts to go up my stoma (turtleneck). I should order some clear bags to see what it is doing. Coloplast Sensura Mio, it's hard to see even with the little window.

Beth22
Oct 01, 2024 3:39 am
Reply to Rancher

Hey there,

Lol, my stoma now isn't normal by any means. It comes out an inch but then retracts some, then will retract to skin level then pops back out long, moves in a circle like a helicopter, and will flip completely backwards, and then will also go to the right. And mine just doesn't move in and out; the side also will squeeze where the stoma goes skinny then fat.

I have always used the clear bags by Sensura Mio. Have to keep my eye on this one lol, and if you do decide to go clear, they make bag covers so if you ever don't want to see it clear or when you go out, just put a cover on it.

Rancher
Oct 01, 2024 3:51 am
Reply to Beth22

Lol. That's crazy how much your stoma moves. Just when I think I am learning something, something else shows up.😂😂😂😂

I will have to get some clear bags until I get this sorted.

Beth22
Oct 01, 2024 7:50 am
Reply to Rancher

You will get the hang of it and you will find out what works best for you and your stoma. 😁