If you think you have a contained leak....do you take everything off or do you wait?
I was fine all day. Usually by the end of each day I have a contained leak. I woke up with one. Now I feel burning and itching at the bottom of my stoma.
Lately I am going through 2 changes a day. I'd hate to take this off because of anxiety to find nothing. I'd also hate to have my skin looking worse than it did before I cleaned it and dressed it this morning.
If it's burning and itching constantly, despite how many times you rub it, it usually means it's a leak. Especially if you feel the need to rip it off right now.
Sometimes I get these aching pains, not from a leak, but because the paste is pulling on the skin. It usually goes away after a while. Or a scar or other itchy things going on under there, but a few rubs and it's usually gone. But not a leak, that just keeps on and on itching and burning. Even worse with coffee, burns like hell and there's absolutely no doubt it's a leak.
If a leak, the digestive enzymes eating your skin are just going to make the wounds worse and bigger.
You need to reexamine your application process, behaviors, food, and appliance choices. You should be getting 3-7 days out of a wafer.
It isn't easy. But you have to keep trying.
We can help you through a lot if we know more details. See pictures of your burn wounds and stoma. What products you're using, what you're using to clean or treat the skin around the stoma, your daily movements, eating habits, and sleeping position, etc.
It's a lot to coordinate, believe me. Some of us have been fighting our stomas for years.
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I'm still new at this, but I think you need to change whenever you have a leak, contained or not. Your skin is being exposed to output and will degrade.
Something is wrong if you are having that many leaks. You need to figure out what is causing the leaks. If I were you, I'd consult with an ostomy nurse. You should be getting more wear time than a few hours.
You do 🫤
And the only option is to get that off your skin now. Are you using a one piece?
Where it burns/itches is where your leak is… loop ileostomies can be real buggers when it comes to leaks.
Do you have any indents in the skin in that area? When you change positions can you tell if that shows where a problem area might be?
A contained leak is like a fuse burning towards a few sticks of dynamite.
The root cause behind the daily changes needs to be addressed.
It's been mentioned that 3-5 days is the average for an ileostomy.
You are losing your seal power. Contact surface if irritated won't adhere. Solve that issue first.
Air drying helps skin. Medication helps. Stoma powder is not used for irritated skin.
A leak is a leak. All you’re doing by not fixing it when you can is asking for a mess. I understand if you’re not at home and waiting til you get home to fix it, but if you can fix it, fix it. Also, if you’re going thru 2 changes per day, even everyday unless you choose to, because of leaks, you need to adjust something in your setup. There’s no logical reason a properly applied bag/wafer doesn’t last 2+ days at least and usually more. Something needs adjusting IMO.
It was a leak. I use Coloplast Mio convex flip 2 piece. Brava ring. C strips and the belt to hold it.
I don't like convatec rings, they are dry and don't stick. I hate their wafers and bags.
Hollister rings I had are too small. I had samples.
Everything was fine until it wasn't. I've tried paste. Crusting with powder, cavilon spray, then tried eakin spray. I tried protective sheets in attempts to let my skin heal. I had to use aquacel for a few days due to the separation issues and the oozing and bleeding.
This morning I just used barrier wipes, the ring and bag.
Every day my stoma is squirting straight bile, bright green, sometimes chunky. But without fail, I am squirting bile for hours. I'm drinking 64+ oz of water daily. I eat oatmeal and banana with 6oz of coffee with oatmilk. For lunch I eat a peanut butter and jelly. For dinner it's usually a protein and a carb like potato or noodles. Since this bile diarrhea, ice been eating a lot of sweet potatoes.
I leak at each side right at the middle and at the bottom.
Hi, it's always in the middle on each side and the bottom. My skin is sore but not weepy anymore, and I was getting 2 days out of the wafers. Now I have this serious bile issue happening, and that kills my barriers. It's coming out of me with force. Straight bile. Sometimes with food, but mostly bile. Someone mentioned Bile Acid Malabsorption. I need to make an appointment with my Neurogastroenterologist anyway. Maybe he can help.
I think getting up and down causes issues; it's definitely more comfortable to stand, but I can only do that for so long before I'm exhausted. Since I had surgery, I've been sleeping on my back, inclined.
Keep trying different manufacturers. Contact Hollister to get free samples of their 2-piece system.
Please describe your wafer change process.
Removing the wafer. Very important. Don't pull the wafer off, no matter how careful you are. Use medical adhesive remover spray or wipes. Gently lift the fabric edge of the wafer, use a finger to gently roll skin away from the wafer while holding the fabric steady. Use remover wipes to separate the wafer from the skin around the wafer's main seal. Take your time. It's easy to damage skin without realizing it.
Cleaning/prepping the peristomal skin. Make sure your soap contains no lotions, dyes, or fragrance. These chemicals interfere with wafer adhesive. I use Cetaphil soap. Skin must be dry. Some ostomates use a blow dryer, set on low, to ensure the skin is totally dry. Do you use barrier film?
Cutting the stoma hole, test fitting the wafer. How much clearance, wafer hole to stoma, do you have?
Warming up, molding, and stretching the barrier ring. Then fitting it around your stoma. Do you cut through one side of the ring? Then, wearing gloves, stretch, pull, and pinch the ring until it's a long ribbon? How do you fit it to your stoma?
Installing the wafer. Do you warm it up first? Wear a belt after installation?
Hollister 2-piece system is what I use. With a snap-on bag...after wafer installation, you could fit a second barrier ring on top of the wafer, around your stoma, then snap on the bag. So a double seal. Also, you can snap off the bag to rinse it out, or check the ring, reposition it, or put on another. The 2-piece system gives you a few options a 1-piece does not have.
You do need to get that bile output under control. Some ostomates eat a few marshmallows to slow output, but that's temporary. Hope you get help soon.
I've tried marshmallows too. It didn't work for me at all. I tried to let it breathe but I am high output and this bile is crazy. So I was trying to catch it in the bucket and I was using domberos with a microfiber cloth to wipe my skin.
I use adhesive remover wipes to take off my barrier and wafer. I don't ever need to pull, it just melts off.
Then I shower. I use dial antibacterial soap then I'll use head and shoulders around the stoma. I use a super soft make up brush to clean this area because I don't want to irritate my skin further. When I am out, I tuck a puppy pad into my underwear and let it dry while I prep my wafer and cut it. I use barrier wipes. Then I use the hair dryer to warm the ring and I place this around my stoma, then I use the hair dryer on my wafer and place that. I hold it there for a min or two- leaving over because this freaking bile. Then I place my belt to hold it on while I get my bag. Place that and I'm done. I keep my belt on all the time. All day all night.
Not everyone gets more than 2 days. I've heard horror stories where people are leaking multiple times a day. Seven wafer changes.
There are plenty of logical reasons for a wafer or barrier ring to lose its hold. This bile for one. It's literally acid. It eats away at the barriers quicker. I have burns from it on my skin from dripping down while I'm trying to change my appliance.
I was fine, everything was good and then I started having mucocutaneous separation and weepy skin after pushing it 3 days. Weepy skin won't hold adhesive. You need to get creative with your applications. It's not as simple as...there's no logical reason why you can't get 2+ days with a properly applied appliance. There are a lot of factors. Not just the application.
I see my surgeon Monday for my post op. I'll be 4 weeks post op on Wednesday.
G-Day Smnard, sleeping on your back is not a good thing; it allows the acid to pool around your stoma. Try sleeping on your side. Regards, IGGIE
I'll try. I sleep upright for now. Propped up on pillows. It hurts to be on my side. The sutures pull and that hurts!
Hi Sm,
Maybe I missed it, but I didn't see where you said where the loop is in your bowels... in your colon or your small bowel? You also didn't say how close to your stoma you put your ring and wafer. You're right in that some don't get much time between changes/leaks... but they should. As for your bile... bile isn't acidic. Bile is considered alkaline and helps neutralize stomach acid when it enters the small intestine... otherwise, that stomach acid would tear up your bowels. So if bile on your skin burns... something else is going on. Your stoma protrudes a good amount, so it's not clear why you're getting these leaks so quickly. You mentioned where the leak occurs, but not when. Is it after you get up in the morning, during the night, or during the day? Without more info, my thoughts are:
You might be leaving too large a space between your stoma and ring... you want this pretty tight so when the ring expands it makes sort of a turtleneck around your stoma.
You're not adjusting your belt tension when you sit/lay down. You'll find your belt will get pretty loose when you sit or lay down, depending on how you position yourself. If you don't tighten it up when you're sleeping/sitting, it's not doing much to hold your barrier to your abs. Conversely, if you keep your belt too tight, it can distort the barrier and affect adhesion in spots.
You're producing too much stomach acid... which is common. I'd mention it to your gastroenterologist when you see him/her. I'd also check the pH of what you think is your bile. You can get pH strips cheap online... or if you have a pool, you probably already have them in your test kit. It would be good info to have for your doctor.
Lastly, skip the coffee in the morning and have breakfast without anything to drink, if you can. See if that helps with your output. I also wouldn't drink pure water. If your colon isn't in the game, you won't absorb most of it. Switch to an Oral Rehydration Solution instead, and don't drink more than 4 oz at a time. Try to only drink between meals, and at least 20 minutes after you eat. I know this might not be practical, but try it for a day and see if you notice any difference. That should reduce your liquid output. If not... it's also telling us something!
Hang in there, we'll get you straight!
;O)
Hello Smnard
Halve your water for a couple of days; see if you notice a difference. Too much plain water can go straight through you.
Hi SM, I agree with Bob and Axl: less water and more rehydration drinks, and sipping, not drinking. I use powdered Gatorade that I mix on the weak side and also one called Liquid IV that I mix with more water than called for. But that's not all; I also drink some milk, coffee, tea, and occasionally V8 juice when I'm feeling punky from overdoing yard work, etc. I also make fruit smoothies with whatever we have on hand: bananas, canned pears or peaches, strawberries.
It's leaking during random times. It woke me one day. The other times it's happening in the afternoon or evening. I'm not doing anything strenuous. I have a desk job.
Maybe I'm not putting the ring close enough. I do worry that I'll put it too close and cause issues. Would I know if I put it too close? What will happen?
When I finally got it on last night, I think I did it well. So far today I don't feel burning.
I do have pool test strips! I will do that. Without fail, around dinner time I will start blasting the green acidic stuff.
The ostomy specialist told me to drink 8 oz every hour. I use the electrolytes for flavor because plain water is super boring sometimes. I don't use a lot. Just enough to flavor. I don't really like sweet things either. I can definitely cut back on the water. Thank God. I will try anything.
I'm going to call my GI now for the appointment.
I definitely like to keep my belt snug. When I go to bed, I tighten it slightly. Sleeping on my side causes issues with it. I'll keep tweaking stuff. So far today, I'm okay. Fingers crossed.
Are you drinking coffee? It goes through me like spit through a bugle, so consequently, I don't drink it at all and haven't done so for many years.
Hi Sm,
Your ring can be put right around the base of your stoma... no space needed. The barrier hole has to be cut a smidge bigger... maybe an eighth of an inch or so. The ring will form to your stoma very quickly, while the barrier material takes a little longer... which is why you give it a bit more clearance. Your stoma typically changes its diameter (smaller at night when it's less active and larger during the day when it's working hard), and its color will change as well... from a paler red at night to a deeper red once you wake it up.
One thing I forgot to ask was what motility meds are you taking... if any? If none, you might want to talk to your gastroenterologist about that. If you're put on Omeprazole (Prilosec) to reduce your stomach acid potency, that should also act to slow your motility down a bit... so possibly win-win.
8 oz of water every 8 hours explains your very liquidy output. Remember that most of the water you consume, and the water that's in what you eat, is absorbed in your colon, not your small bowel. So if your colon isn't between your small bowel and your ostomy bag... all that water will not be absorbed and end up in your bag. I don't know why ostomy nurses don't explain that better to new ostomates... but few do.
Let us know how things are going!
;O)
You asked about the gap between the stoma and ring.
Some say no gap. Make it flush.
Others say 1/8 of a gap.
I heard if using a gap, stoma powder could be used to fill the gap and protect skin in that open gap.
It's trial and error. Also note the alien spud breathes, so I lean toward leaving a gap. Most times the thing expands outside the diameter of the ring—in my case 1" 3/8 diameter, mushroom-like.
To me, it's breathing and once it inhales, ⚡️ that's my cue.
Sometimes I think I need a shoe horn to fit the appliance on. It's that tight. Ileostomy here 8 years, never saw this breathing activity before. So it's new game time.
No meds for now besides anti gas things and Tums (6 Tums, 3x a day for low calcium)
I tried putting my ring right up against my stoma before I placed the wafer. So far it's ok on the sides but the bottom is uncomfortable. It's bothering me bad, not burning but sore. I feel like the output sits there
My experience with the Flip appliance was very similar: frequent leaks, massive blow outs. I went back to the Sensura Mio Soft Convex with a brava ring and the problem was resolved. You might consider calling manufacturers to ask for samples and try different systems. Meanwhile, as others have said, experiment with adjusting intake and possibly adding medication. You're on the right track to see your CareProvider and I would also suggest a date with an experienced, certified Ostomy Care Nurse.
If it is burning and itching, you should change it. Maybe if you don't, you should use a barrier ring. It might give you longer wear on your appliance. Also, a 2-piece appliance might work better for you if you are using a one-piece. Do you use a barrier film? A non-sting barrier film might help you with burning and itching and poor skin quality.
I'm not sure which company has transparent pouches or a fold over a transparent area so you can tell if you have a leak. I use a very old fashioned system from almost 50 years ago and can go 6-7 days without changing. Sometimes though, if I don't get it on right, I might have to go through another change but I can usually tell there is a leak. One of my ostomy friends told me to spray Flonase on the skin to heal it. It works. Just make sure it drys before applying the pouch.
My leak issues are usually residual adhesive stuck that only comes off if I rub it a little. Even when I’m sure I have wiped it all off with the remover and spray, there seems to be some stuck like a thin film. I’ve gotten to the point where leaks rarely happen. The itch and burn and urge to rip the appliance still happen. That’s my sure fire indication it needs changed asap.
Hi, I used to have contained (and uncontained) leaks all the time. I don't use a two-piece system but used a flat one-piece. I also used to leave a small gap around Sid the stoma.
Since changing to convex one-piece bags and leaving no gap (but not scraping the sides of Sid), I have had just one uncontained leak in 3 months.
I've also tried a fair number of different makes, and I find Coloplast the least kind to skin!!! I also find the viewing window on them to place the bag pretty poor.
I finally settled on Salts and am very happy with them. Not sure if they are available in the US as I'm from the UK. However, I would recommend trying a different bag - type and brand. Also, drink more milk and yogurt; it counteracts the acid in the bile.
Hi with reference to my last message, I meant to say one contained leak. No uncontained leaks at all.
I have had an ostomy for 18 years. A year ago the product I was using for skin prep was discontinued. All the new products which I have tested are silicone based. I am having trouble getting my bag to stick to it. I was having seepage like you're describing. Once the whole bag fell off. I haven't been able to find anything that works so I discontinued using it. Now my bag sticks so tightly it's hard to remove, but no more seepage inside or outside. I know it's hard not to use a skin prep when your skin is all messed up but I think that could be the issue with your bag coming loose from your body.
My first week was horrific. Was going through 3-4 changes a day, and my skin was wrecked. The fix for me: Putting the hydrocolloid barrier extenders on first, right around my stoma. That gave me a dry surface to apply the wafer and it allowed my skin to heal. It only took a few days for my skin to heal. I did the hydrocolloid barrier extenders for two changes, and was good to go. Have not needed them since for that purpose.
I also abandoned paste. I couldn’t get a good deal and it burned. Was also awkward to work with. I use the 10 Aces Spray, then a cohesive ring. I use a hair dryer to warm the ring and wafer.
No leaks at all since then. (Has been a few months). My skin is great, and I go seven days between wafer changes.
My husband had frequent leaks in the beginning until we figured out what was wrong. He had a few gaps for which we started using paste. It helped seal better. We always start over if there is a leak. As the incision healed and he gained some weight, the gaps were no longer there. This group was very helpful as we learned what worked best for us. And using an ostomy belt was the best suggestion as it hold the wafer tight to the body. My husband didn't want to use one and now he wouldn't be without it.
