Struggling with Ostomy Bag Leaks and Seal Issues

 

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Hello! I am continuing to leak daily. This past week I experienced a leak while sleeping from Tuesday into Wednesday (pancaking). Then, even worse, from Wednesday into Thursday (air popped it off). It was like a nightmare. Then again last night into this morning.

After arguing with EdgePark trying to order supplies (more than 20), they finally sent me the order. I switched to convex light Mio Click. I was hoping this would help, but so far it hasn't. I really thought I'd get through the day.

I'm noticing a real problem. My wafer just barely covers my belly button. Then I use barrier strips, and this again just covers my belly button. However, it starts to lift, and then everything starts to peel off. If I shower, forget it. I have to take everything off and reapply. I even got the XL Y strips to cover it up. My skin is okay.

I started using a needle to poke a few holes in the very top of my bag. But I need some air in there to avoid pancaking. But then I get too much air, and it pops off. I wrap my waist with a dog pad to avoid a giant mess again. At least I can go back to bed after I get myself cleaned up.

I started Questran for Bile Acid Malabsorption. This stuff is freaking gross. I can't wait for it to start working. I either have acid spewing out of me or super thick paste.

 

I'm going crazy, guys. What the heck do I need to do to keep it sealed by my belly button? I tried using an extra strip, and it doesn't help. It always separates and lifts.

I’m sorry for all of the issues you’re having. I used to use a product called an “osto-ez vent.” You were mentioning poking a hole in the top of your bag, which can be risky if your output winds up near the top of the bag. These vents stick on your bag, over a hole that you make in your bag, but they have a cover. You remove the cover when you need to let air out and then replace it when you’re done. It might be worth a try.  

 

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It's worth a try! I think I've seen them before. 

If you cut the wafer to prevent from having to cover your belly button, would you have enough left to seal before the indent (of the belly button) starts?

Sorry you're going through this.

Have you tried Hypafix tape?  This tape can be used to hold down the fabric adhesive edges of the wafer.   Run the tape across the wafer fabric, sticking the tape ends to your skin.  Use medical adhesive remover to remove.  

Consider a larger support belt.  Bigger belts completely encompass the wafer flange, applying equal pressure.  Smaller retention  belts only snap on the wafer flange side clips.  

I'm sure you've heard this, but skin prep is most important.  Skin must be clean, dry, and free of any soap related chemicals like lotions, fragrances, and color dyes.  These chemicals leave  residue that interferes with wafer adhesion.  I use Cetaphil soap, which works excellent.  

Continue to post your progress.  It takes time to discover what equipment and prep works best for your unique situation.

 

 

 

 

 

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Good advice. Can't cover that belly button. It's a pothole. Like trying to put a piece of wood over a hole. The hole is a weak link in the system.

And those E-Z vents work.

1- Let out trapped air, aka gas.

2- With a tiny needle = syringe, can add water to soften that pancake area or just plain help in emptying the bag at dump time.

Your tummy looks flat. Your stoma looks decent enough extended. Adhesion seems to be an issue. You wear a belt. A wrap may be supportive to keep the bag in one place. As BB said.

I feel your pain, hon. The alien spud is doing a job on you.

It's exhausting. Don't give up. Something, in time, will work. Just keep the skin as clean as possible. Cut out the wafer to avoid the belly button hole for better security. There are ways to get this leakage controlled. You are doing your best. Just gotta find the right combo.

What foods do you eat to have such issues? 

Seems as though it may be time to give up on this product(s) and seek one that works for you. I have tried many different ones…this is very exhausting…so many choices, so many “dealer add-ons”…again, it's exhausting and discouraging. Getting to a point where you can comfortably and confidently wear a product is absolutely necessary both physically and mentally. Hopefully, you will find the answers you are seeking.

You may want to try your luck at ConvaTec (me+) 1-800-422-8811. This is where I started a few years ago - they were very helpful…not sure if they still have this service - it was called “me+.” You may want to check it out. jb

I'm looking at that tape today. For skin prep, I use Aveeno dry skin body wash for sensitive skin. I have only been using a barrier wipe before my ring. Occasionally, when I'm airing it out, I'll use some aloe right from the plant. I always wipe it down with adhesive remover wipes to be sure it's clear of gunk. I woke at 2 a.m. today. A leak again, this time it was a pancake issue.

I thought about that this morning at 2 a.m. when I woke with a major leak again. My only concern is that it won't stick as well. I think I'll try that Hypafix tape and cut it.

Looks like you put a lot of things on that causes slippery conditions. Any body wash for dry skin will have moisturizer of some sort. Aloe, that’s like super slippery. I doubt a barrier wipe would help much if you mix it with slippery stuff. 🤷‍♂️  

More like an encyclopedia, dude.😆

Be sure to completely clean off the adhesive remover. The last thing on your skin should be either plain water (no soap) or barrier wipes. Then dry well.

As pointed out already, that soap probably has moisturizer in it. The moisturizer is designed to stay on the skin and can interfere with your wafer adherence.  Try cleaning with only plain water a time or 2. 

I hear you. But the stigma of anything attached to one's body is enough to make one jump off a bridge.

Bad enough wearing a simple hearing aid externally, you get looked at strangely.

Whatever the device, though, I doubt if surgically installed into our bodies it will yield good results at all.

I know it's more involved than just removing a pig's intestine and putting it into a human. That would be nice. Achievable? Maybe one day. I doubt any time soon... but then... forget about breakfast served with that meat 🤦‍♂️😆

Nah, I doubt they will ever transplant pigs intestines... I'm holding out for organs grown from human stem cells. Not sure if I'll live long enough to see it but I think it's coming. 

True, but pigs today, research, funding, etc., way tomorrow.

Try eliminating the Aveeno dry skin body wash.  Any product used to alleviate dry skin will have a moisturizer chemical or oil in it. 

Eliminate the Aloe.  Adhesive remover wipes remove adhesive... won't get skin clean, if the skin is not clean to begin with.  So applying Aloe, then using a wipe, could still leave trace amounts of it on your skin.  

Paristomal skin MUST be clean and dry for a wafer (flange) to properly adhere and form a liquid tight seal.  Imagine how paint won't adhere to a greasy wall surface.

Preventing leaks is a challenge even with proper skin prep.  

I use a 2 piece Hollister system.  For me, it's easy to "burp" the bag to release gas.  Always best when standing up.  Even when wearing a heavy duty support belt, it's easy to do.  The bag flange has an extra tab pointing up.  I grab the tab and slightly separate the bag from the wafer, then lightly compress the bag with my other hand.  Gas flows out.  Then press the flange seals back together.  This does, "color" the air... so I gotta be careful around the house.  My wife can be upstairs, me downstairs ... and she starts yelling.  😇   On the other hand, it was an excellent boss repellant at work.  😉

It takes time, and trial and error... to discover the skin prep and equipment that works best for you.  You might have to modify the wafer.  I'm a little guy, the square wafer is huge on my stomach.  So I trim half the fabric tape off the wafer bottom.  So when I sit, a small fat roll I have, doesn't impinge the wafer fabric tape... eventually causing mild irritation (itching).  You might have to trim to avoid the belly button.  Or tape over belly button with Hypafix, then install wafer.  Or fill the area with a piece of moldable barrier ring, then put on wafer, tape over the area with hypafix.

Contact ostomy supply manufacturers directly, order free samples.  I use Edgepark, they have sent me free samples too.

 

 

Any kind of body wash or soap contain trace amounts of oils that gradually build up and will always leave a residue (even if you can't see it).  Also the remover (and barrier) wipes over time will leave a residue that makes it harder for the appliance to stick well as they too contain trace amounts of oil.   

I always use just warm water and a soft washcloth to clean the peristomal skin and really dry the area well before applying a new bag (with either a paper towel or microfibre towel - they zap the moisture right out) - all advice given to me by my stoma nurse when I first had the surgery - the less "products" you use the healthier the skin is.  

Hey Shamrock, might I suggest… instead of listing any/every possible problem this person may have at some point in their life with an ileostomy… it’s easier especially on newbies not to be overloaded with information… 

Diet is very individual and what may be fine for one person with an ileostomy is not for another person… even if they have ileostomies from similar health issues. 

I haven’t looked, so I’ll ask, have you made a dietary post under ostomy tips? Sleeping tips? etc…  A lot of people come on here looking for a solution to a specific problem and answering a question with a list that may/may not be relevant can add to frustration when a person is already struggling. 

Please don’t tell people they can only sleep on their backs. Not true. I think you may need to sleep on your back, but everyone with an ileostomy does not need to be told that. 
People get pretty creative with the hand they’ve been dealt, I wouldn’t want to be the one to tell someone there is no other way and deprive them of finding what works for them. 

Ugh. I’m sorry…better days ahead ☺️

Stick the hose from a vacuum cleaner on your stoma and suck the shit out a few times a day. You can send the $10,000 to IGGIE Australia. Have a good Christmas.

U...my far away friend...need...professional help. I will join you though! 🤣😆

Good point. Was told the same thing: warm water, special cloth or paper towel, air drying a few minutes without a hair dryer. I fan the area with a small piece of cardboard. Works for me.

Hahaha, I just spit my coffee out!!  

 

Totally agree!!!

G-Day CC

Perfect reply to Shamrock; let's hope he pulls his head in with less overstated long messages.

Regards, IGGIE

Quite an image there.  IGGIE..

🤔 Don't encourage him!🤣

I also heard about that little Osto-Ez plug. A guy on YouTube, his site is called Sydney Stoma and his name is Chris - he has loads of videos and advice - check him out! He shows you how to do things.

Mindy

These work! But you have to invest a bit of time installing it. The results are well worth it. If companies made all their bags this way, I believe it would improve living life with a stoma.

But I think it would take away from their bottom line: profit.

You'd get fewer leaks, better burping, and longer wear time.

I used them early on but found that burping of my bag occasionally caused some stool to come out. Another issue involved my clothing - sometimes my pants would rub against the plug and cause it to lift away from the bag and, well, that little pinhole was already a pathway into the contents of the bag. Long story short, I decided to rely on opening the bottom of the bag to burp it when I needed to.