Struggling with Ostomy Bag Leaks and Seal Issues

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278
Smnard
Dec 16, 2024 3:42 am

 


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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.

eefyjig
Dec 16, 2024 3:57 am

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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Smnard
Dec 16, 2024 4:05 am
Reply to eefyjig

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

CrappyColon
Dec 16, 2024 4:34 am

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?

Beachboy
Dec 16, 2024 5:07 am

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.

 

 

 

 

 

 

Living with Your Ostomy | Hollister

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warrior
Dec 16, 2024 9:31 am
Reply to CrappyColon

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.

Shamrock
Dec 16, 2024 11:41 am

Holy cow, you're having a lot of issues, so let's begin...

1: You'll need to train yourself to only sleep on your back with your upper body elevated slightly so contents flow to the bottom of the bag. You can do this by using pillows under each arm and some pillows behind your chest and head. Lying on your left or right side causes problems because the belt is either pulling or the body is causing the wafer to detach. Obviously, lying on your belly causes pressure issues.

2: Pancaking and ballooning are caused by diet, which you can control. I'll post my list at the bottom of this post. You don't need to poke holes in your bag. Simply sit on the toilet and dump, then gently press the bag to let extra air out, but you don't want it completely flat as a vacuum also causes pancaking.

3: You need to take the Coloplast test to see what appliance is appropriate for you.

https://www.coloplast.us/global/ostomy/ostomy-self-assessment-tools/

I suggest you start with a one-piece (bag and wafer combined) instead of a two-piece (bag clicks on) as this is more secure. If you do things right, you'll see a two-piece system is nearly useless for an ileostomy because your wafer will last as long as the bag (about 4-7 days) and just change both at the same time.

4: Showering. Unfortunately, you'll have to forsake hot showers while the bag is on because your body will simply sweat it off. So take lukewarm showers and don't direct water onto the bag. Use a washcloth to wash your chest instead. I put some waterproof tape along the top edge of my extra-large barrier strips just in case. The bag may get wet regardless, but blow drying works to dry it out. For the Coloplast belt, simply use small trash bags unfolded to tuck under the belt; however, NEVER lift the belt as that will cause wafer separation. I only remove my belt if I'm going to do a bag change. Make sure the belt isn't too tight or too loose, just snug.

5: Belly button, I simply fill the hole with a little wad of toilet paper to level, then cover with a 1/4 cut extra-large barrier strip piece to give it strength. It will then be partially covered by the wafer flange and the full exterior barrier strip later. Combined with a belt, this cures the belly button weakness issue. However, NOT if you're sleeping on your left side.

6: Pancaking caused by vacuum. When you dump, use a couple of drops of liquid antibacterial dish soap followed by a water bottle and wash your bag right there on the toilet followed by a couple of rinses. Then use a long plastic stick or something to insert into the bag and separate the two pieces of plastic bag, then a drop of the antibacterial dish soap and a little water, then seal. Then roll the bag up some and force the extra air near the top of the bag. The bottom of the bag will cling and trap the air near the top of the bag. If you have a pancaking issue caused by diet, the stool is thick coming out, you train yourself to look and feel for this occurring BEFORE the bubble starts forming. Then use the method above to wash, rinse, then add water and seal, go lay on your back and gently massage the pancaking loose. Don't squeeze the bag or try to physically push the pancaking output loose; these can cause a seal to leak just like pancaking or ballooning putting sideways pressure on the seal. Once you control your diet, you'll learn what to eat to avoid pancaking and ballooning issues most of the time.

7: Acid issues. Coffee is the #1 cause of leak burns being far worse than normal. The body considers it a poison and is flushing it out along with coffee acid and stomach acid with very low pH levels. However, normally your intestine pH level is about 8. Any caffeine is going to cause diarrhea issues where the stoma just keeps spewing. If you switch to tea, the burns will be less intense; however, diarrhea will occur, which if you have a good bag on, then it doesn't matter; you just wait it out. However, if you're still learning and having leak issues, then it's best to avoid caffeine until you do get good bags on consistently. Because a spewing stoma is about impossible to get a good dry seal going. You may have to wait in the shower for hours until it does calm down.

8: Without a picture of your stoma, it's difficult to ascertain if you need a ring or paste. Usually, if the skin is flat, clear, level, and without wounds, and the stoma sticks out well, then a ring will work. However, if anything else, then paste usually works better, but it's trickier. However, when you wash around the stoma, I use only antibacterial soap or regular soap without lotions, oils, etc. (or from runoff from shampoo) as that residue will cause a bag to detach prematurely. Skin required to be clean, dry, dust-free, and oil-free (like from spew), and if not, then you head to the shower to clean it and blow dry the skin thoroughly until you can feel the skin isn't slippery anymore. I use paste because I can apply it to wounds with a thin coat around the stoma 1/2" to see if it's going to stick first, remove and discard if it doesn't. Blow dry and try again until it does stick. This way, I'm not wasting an expensive ring or a wafer. The antibacterial soap also causes burn wounds to dry out some, killing the digestive enzymes eating the skin and causing weeping issues which makes adhesion impossible. However, with paste, it might be necessary to mix in a little stoma powder first before applying to get it to set faster. Paste can also run down, so lying on one's back for a while may be required until it does set up; also, delay putting the belt on until it does because the belt will squeeze the paste out more than you want. Also, with a one-piece, you have to make sure paste doesn't cover the stoma, or that will cause a clog. If that accidentally occurs, I just stick my stick up there and scrape it loose. Otherwise, I put the paste about 1/3" away from the stoma, mix in a little bit of stoma powder, and press down so the flange sticks, and usually, the paste goes right to the edge of the wafer hole. It doesn't have to go right up to the stoma because I applied the thin paste coat earlier. This two-step process is necessary for me as I have a near flush stoma in a belly fold. Which I have to horizontally weaken the convex wafer bubble so it's more flexible and curved so it bends when I bend. I use paste because I can control the adhesive strength if needed. So without seeing your clear stoma, I can see which would be better for you. But any dips, bumps, wounds, etc. usually paste is better than a ring. You don't want spew getting underneath to reach your skin.

Okay, with that, I'll give you my copy and paste info. It's a lot, sorry, I'm very thorough. 😁

I do drink plenty of water and an electrolyte drink occasionally. I ensure I'm urinating and it's a normal yellow or clear, not dark orange or dry, which would indicate dehydration.

Coffee can make output very acidic, making the burns far worse. Caffeine can cause diarrhea where the stoma just keeps spewing for hours. Dried Chinese Crispy Noodles, Cheerios, or applesauce (peeled apples) or bananas are the exact opposite, a stool-thickening food. By mixing these with other foods, one can manipulate their stool output and counter the issues above. Also, the severe thickening helps in cases where one has severe diarrhea and is unable to reattach a new bag due to high flow.

Eating Guide

Partially copied from my nutritionist's guide. Ileostomy Nutrition Therapy from the Academy of Nutrition and Dietetics. (This handout may be duplicated for client education.)

My recommendation is to see a nutritionist for the full guide as not all can be pasted here.

I've added my own observations to further clarify

Chew all foods well to the consistency of paste. Spit out any hard stuff. Important!

Foods That May Cause Blockage (very bad, avoid!) and

Apples, unpeeled (peeled and applesauce are excellent thickeners, don't eat the skins or the core, chew well)

Bean sprouts, Cabbage

Casing on sausage (inside fine if no tough parts, avoid swallowing if a chunk is felt) Also, sausage-like meats like pepperoni and salami contain indigestible bits.

Chinese vegetables (stir-fried crunchy, too hard, need very soft veggies with no skins)

Coconut, Coleslaw, Celery (avoid)

Corn (grits also, corn anything doesn't seem to dissolve in the stomach)

Cucumbers (skins bad, inside chewed up good seems okay, no seeds)

Dried fruit, raisins

Grapes, blueberries, etc. (skins and seeds the problem.)

Green peppers (red, yellow also) pureed or very very small and soft seems okay in small amounts

Mushrooms (doesn't dissolve in the stomach) pureed or very very small seems okay in small amounts

Nuts (totally avoid)

Peas (mushy interior okay, like pea soup, skins a problem)

Pickles (skins a problem, inside if chewed up good seems okay, seeds not)

Pineapple (liquid okay, mushy parts fine, hard parts not, rather risky as parts of mushy may not digest)

Popcorn (totally avoid)

Potato skins, inside (no hard parts) fine.

Relishes and olives

Salad greens (diarrhea nightmare too)

Seeds and nuts (avoid)

Spinach (doesn't digest, pureed perhaps)

Tough, fibrous meats (for example, steak on grill, well done, tough parts especially, over-grilled chicken or dry pork chops. Juicy grilled or pan-fried chicken, shredded pork in juices, medium rare steaks, hamburger better. Nothing deep-fried ever, diarrhea city.

Vegetable and fruit skins, (any avoid)

Whole grains (no grits, rolled oats oatmeal seems to be okay, oat cereal is an excellent thickener)

Foods That May Cause Gas or Odor

Alcohol, Apples, Asparagus (stink), Bananas, Beer, Broccoli (clog hazard)

Brussels sprouts (clog hazard)

Cabbage (clog hazard)

Carbonated beverages

Cauliflower, Cheese, some types like cheese food is bad. Real cheese may be okay.

Corn (clog hazard), Cucumber

Dairy products (toot city)

Dried beans and peas (clog hazard)

Eggs (some don't digest in the stomach like scrambled or omelets, but over easy seems fine for some reason)

Fatty foods, Grapes

Fish (cooked unseasoned salmon in small portions may not, nor stink, same for raw tuna seems fine)

Green pepper (red and yellow also, clog hazard unless very small and very soft in small quantities)

Melons, Onions (clog hazard)

Peanuts (clog hazard) Prunes

Radishes, Turnips

Soda and sipping using straws, (drink from glass instead)

Seafood (oh God does it stink!)

If you're having pancaking issues, a small amount of something above (like having a soda during a meal) could introduce some air into your diet and thus into the bag. Also, by avoiding too much thickening foods by themselves which often contribute to pancaking.

Foods That May Help Relieve Gas and Odor

Buttermilk, Cranberry juice, Parsley

Yogurt with active cultures (Greek yogurt)

Foods That May Cause Diarrhea (looser or more frequent stool)

Alcohol (including beer)

Apricots (and stone fruits)

Beans, baked or legumes (clog hazard)

Bran, Broccoli, Brussels sprouts

Cabbage, Caffeinated drinks

Chocolate

Corn (in my experience corn anything doesn't digest in the stomach, just passed through and out, kernels/popcorn will clog)

Deep Fried meats, fish, poultry (KFC, supermarket rotisserie chicken very bad, and anything soaked in brine)

Fruit juice: apple, grape, orange (small amount okay)

Fruit: fresh, canned, or dried (small amount skinless okay)

Glucose-free foods containing mannitol or sorbitol

Gum, sugar-free, Licorice

High-fat foods, High-sugar foods

High salt foods (KFC, supermarket rotisserie chicken)

High seasoned foods (like blackened)

Milk and dairy foods (small amounts okay)

Nuts or seeds (bad, clog hazard)

Peaches (stone fruit, one rarely okay)

Peas, Plums (stone fruit)

Prune juice or prunes

Soup, Spicy foods

Sugar-free substitutes

Tomatoes, Turnip greens/green leafy

Vegetables, raw

Wheat/whole grains, Wine

Rice (very soft 1/4 cup in mixed in food okay), refried beans (1/4 cup okay) pasta (one cup max).

Any foods soaked in brine or deep fried (rotisserie chicken, Kentucky fried chicken, etc)

Solent nutritional meals

Foods That May Help Thicken Stool

Applesauce (peeled apples, no cores)

Bananas, Barley (when OK to have fiber)

Cheese (processed cheese food a clog problem, use real cheese)

Dried Chinese Crispy Noodles (severe thickening, mix with other food that causes diarrhea)

Marshmallows

Oatmeal (when OK to have fiber)

Pasta (sauces may increase symptoms) (in my experience more than a cup of pasta causes diarrhea)

Peanut butter, creamy only, nuts clog (may make skin greasy)

Potatoes, no skin (skin clogs, more than a cup may cause diarrhea)

Pretzels (salty may cause more flow water consumption)

Metamucil, mix or crackers (mix in a cup of water and drink before it gels up)

AlexT
Dec 16, 2024 11:57 am

What foods do you eat to have such issues? 

Justbreathe
Dec 16, 2024 12:07 pm

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

Smnard
Dec 16, 2024 12:44 pm
Reply to Beachboy

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.

Smnard
Dec 16, 2024 12:46 pm
Reply to CrappyColon

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.

Shamrock
Dec 16, 2024 1:14 pm
Reply to Smnard

Your issues stem from a combination of factors: sleeping position, diet, and using other products that can interfere with skin bonding.

Sleep only on your back.

Check your diet and what you're eating, like cookies, crackers, etc., without water mixed with them, or other compacting foods.

Skin needs to be clean, dry, oil-free, and dust-free for the adhesive to work.

Check my earlier post; I literally wrote a book for you to get up to speed. 😁

Your manufacturer choice is very good; however, you might have picked the wrong appliance. So take the test to see, as we can't see your stoma until you post a picture of it (clean, please). 😊

AlexT
Dec 16, 2024 6:04 pm
Reply to Smnard

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. 🤷‍♂️  

warrior
Dec 16, 2024 7:25 pm
Reply to Shamrock

More like an encyclopedia, dude.😆

SusanT
Dec 16, 2024 7:38 pm
Reply to Smnard

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. 

Shamrock
Dec 16, 2024 10:21 pm
Reply to warrior

Yes, there is a lot to learn, unfortunately.

There just aren't any shortcuts.

It's either a long, involved post or several months, if not years, of a trial and error process.

It's a really stupid idea to have an ostomy; many won't or can't fully understand or learn the volumes of information required.

I wish someone somewhere would come up with a much easier method instead of having to glue a bag onto one's body.

It seems so archaic.

I'd gladly pay $10,000 for a machine that I could just strap on and only have to worry about cleaning it occasionally and charging it up.

warrior
Dec 17, 2024 2:32 pm
Reply to Shamrock

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 🤦‍♂️😆

SusanT
Dec 17, 2024 4:17 pm
Reply to warrior

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. 

warrior
Dec 17, 2024 5:02 pm
Reply to SusanT

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

Beachboy
Dec 17, 2024 5:41 pm
Reply to Smnard

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.

 

 

Shamrock
Dec 17, 2024 10:32 pm

Even the adhesive remover wipes, without adequate washing and drying, could leave residue to interfere with bonding.

🇦🇺 Jo
Dec 17, 2024 11:41 pm
Reply to Smnard

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.  

CrappyColon
Dec 18, 2024 2:12 am
Reply to Shamrock

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. 

CrappyColon
Dec 18, 2024 2:20 am
Reply to Smnard

Ugh. I’m sorry…better days ahead ☺️

IGGIE
Dec 21, 2024 10:45 am
Reply to Shamrock

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. 

warrior
Dec 21, 2024 12:16 pm
Reply to IGGIE

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

warrior
Dec 21, 2024 12:20 pm
Reply to 🇦🇺 Jo

Good point. Was told same thing. Warm water. Special cloth or paper towel. Air drying a few minutes w/o hair dryer.  I fan the area with a small piece of card board. Works for me. 

eefyjig
Dec 21, 2024 1:41 pm
Reply to IGGIE

Hahaha, I just spit my coffee out!!