Help! My Ostomy Bag Keeps Leaking and I'm Out of Options

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I'm new; last Thursday was my surgery. The longest a bag has stayed was 3 days, and honestly, that was low activity. I've watched videos, and my sister and my husband have helped me. This last one today blew out in 5 minutes. How can I help my poor skin? I used the barrier; I tried calamine lotion, but it burned and had to come off right away. I'm so freaking frustrated! P.S. Every bag they put on in the hospital leaked, and I was there for 5 days.

Edit: My wound care never sent me home with a lot of Coloplast supplies. While I was in the hospital, I went ahead and ordered free samples from Hollister; they won't stick at all, and I think I got more Coloplast stuff. I only saw the wound care nurse once in the hospital. I'm almost out of barrier strips, and we're going to try some paste today. I'm terrified to leave my house, even with my emergency kit. My husband said the doctor told him there was some kind of complication with my body, which is why my stoma is where it is and the shape it is.

Most of what you all have told me we've tried. I researched a lot beforehand because I just knew I was going to have this. I've got a call in to the surgeon, as the wound care people are freaking useless. I've ordered some sheets that will cover this area. If I don't get some resolution today, I'm heading to the ER. Updated photo.
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I'm so sorry! Hubz is only 7 weeks with his, so we've been hit or miss, which I guess is just part of it at this stage. What's worked best so far for him is a flat wafer (every convex shape leaked). His is a slightly recessed stoma, so convex kept getting recommended. His Ostomy Nurse showed us how to add a barrier ring under the wafer to add another layer of width around the stoma, guiding output through the cutout into the bag. Another problem he's had is when there's no air in the bag. It seems to give output no room to come out forward and pushes it out sideways under the wafer. He puts tape or stickers over the filter and keeps a layer of air in the bag (not too much) and has the best result. His WOC Nurse has been most helpful, and we've also watched a lot of YouTube; Vegan Ostomate and Let's Talk IBD are two favorites. Product manufacturers have lots of educational videos, but not a lot on problem-solving. I hope this helps. Here's a photo of a barrier ring if you're not familiar. It can be shaped easily, as you'll see different techniques. Hang in there. It definitely gets better!

Sorry you are experiencing this. What products do you use? Do not apply any creams or lotions to your irritated skin. This will prevent the wafer from sealing. It's important to clean the site with mild soap and water only. Sometimes you need to experiment with different types of wafers and barrier rings to find what works for you. You can and should use a stoma powder, which will help heal the skin and keep it dry so the wafer can actually adhere to your skin. Also, use sting-free skin prep to help protect the skin.

I know this is so overwhelming and frustrating. There are numerous different products available, so if you can, I recommend consulting an ostomy nurse who can help you. Hope this helps.

For the skin, his nurse showed me a technique called 'crusting.' It puts a protective, dry layer over the ouchy skin so the wafer has better adhesion. His skin was much better by the next change three days later. We've needed to use the crusting technique several times now.

First off, your surgeon did a terrible job siting your stoma. It should be placed on a relatively flat area of the abdomen, and it looks like it is practically in a skin fold. I'm so sorry you are dealing with this. I see from your profile that it's temporary, but even 3 months like this is unacceptable. It's no wonder they had trouble keeping the appliance on in the hospital.

First, get some Domeboro soak (available in some drug stores and Amazon). Follow the directions and soak a paper towel with the solution and apply it to the skin. It might sting a little (I was told it wouldn't, but I found it did); however, it isn't bad, and it doesn't last long. This will help dry out the skin and the sores.

Get Marathon skin protectant. Try ParthenonInc.com. Amazon will require a prescription, but it is not really a prescription-only product. It is expensive but worth it in your situation. You may be able to get this on your insurance, but that will take too long, so buy some yourself initially. Apply the Marathon to your clean and dry skin after using the Domeboro.

The Domeboro will help heal your skin, and the Marathon will protect from additional damage. You can stop both of these once your skin heals and you have a reliable appliance. There are other products that may be recommended, and those are worth trying, but these are the ones I think you can get the fastest.

Call the manufacturers of ostomy supplies... Coloplast, Hollister, Convatec at a minimum, and get free samples to try. Try to speak to their ostomy nurses and describe what is going on. You have a bit of a skin fold on top, and the overall area looks rounded to me based on the picture. I think you will need a flexible wafer. Coloplast has a star-shaped wafer that is better for rounded areas. Convatec has a moldable wafer that may help you. But listen to the nurses because they know their products better.

Now for the basics

1) Make sure your skin is thoroughly dry before applying the wafer. Do not use any oils or oily soaps. For now, it is best to wash with plain water.

2) Use a barrier ring; it will help protect you from leaks.

3) Measure your stoma every time. It will change sizes for the first 6 weeks or so. There should be no more than 1 mm between your stoma and the edge of the opening.

4) Get an ostomy belt; this will help hold the wafer against the skin. Even the basic and inexpensive belts that attach to the wafer itself will help.

5) Target replacing the appliance before it leaks, regardless of how long it's been on. You need to protect that skin. You can build up to longer wear times, but the main job right now is to get things under control.

Ask as many questions as you want. We are happy to help.

Avoiding Ostomy Bag Leaking | Managing Ostomy Leaks with LeeAnne Hayden

I'm sorry to hear of all the trouble you are having trying to seal up your stoma so it doesn't leak.

You are new, and we all were new once and went through some kind of leakage and skin issues.

The photo of your stoma looks like it's tied up, as if a tube was bent and tied. If you bent a garden hose to stop water from coming out, you'd get what I'm trying to say, I see there.

Whoa! It appears very close to your skin, which is not good. Called an inny, there are specific products for that type of stoma. Crusting, I'm told, works.

Your skin being that irritated is the reason why the appliance won't stick.

Gotta get skin issues resolved. That sucks the hospital, staff, doctors. No one gave you info to help. Unacceptable, but it happens to a lot of us. You basically are on your own. And we will help you get through this. Just be patient.

We all have been there. Suggestions work for some, while others do not.

You didn't mention using a protective spray. Are you familiar with it, why you must use it? Let us know. Help is coming.

In the meantime, search the forum icon for threads on this. You're gonna be OK. Patience.

I did use the spray, tried the ring; the best we had was 3 days with a drainable 1-piece unit.

Looks horrible, plain and simple. No idea what the orange-colored thing is that appears tied to you. I think I'd march back into the hospital or maybe a different one and insist on being seen immediately.

Oh my, this looks so very painful. I am hoping you can find a good solution quickly. There are some good comments here. I know the skin can heal quickly with the right combination of procedures and products. Seek as much help as you can (as you have done by coming to this website). Call the various vendors for products. The one that helped me most was ConvaTec's me+ at 1-800-422-8811. That was 5 years ago, and I am not sure if they still have the “me+” program. Give them a try. Your picture is worth a thousand words, so when you are able, send it to anyone at the vendor sites that are willing to help. Best wishes for immediate help, relief, and an easier recovery. Hugs…jb

After sending this post, I googled ConvaTec me+ program, and it is still active. I don't believe I paid anything to join, but then that was 5 years ago, and well, you know, times are a-changin'

Dang. You guys give a ton of great info.

Here is my 2 cents.

I use 3M no-sting spray.

I wear a belt like these 24/7.

I get 7 to 14 days of wear time.

https://a.co/d/iV5AIba

https://a.co/d/7rpio1K

https://a.co/d/8DvOMxa

Hi Jnet, welcome to the site. My only suggestion is to lay down when applying the wafer so that it starts out on a flat spot, and the ring I use is a Coloplast brand called Brava. Good luck.

Oh my, jnet, your skin looks angry. You got lots of good advice already. I'm wondering, with that filled circle of red, if you might be allergic to something in the bag material. I used to use Safe N Simple latex-free barrier rings, even though I don't have an allergy. I just liked them. ConvaTec Sur-Fit Natura Two-Piece Drainable Pouch, Coloplast Mio, and Assura EasiClose are bags designed for sensitive skin. I use Hollister bags that have ceramide in them. Your skin may be reacting to the latex in whatever bag or ring you use. Check the ingredients of your current products and think about substituting with skin-friendly products until you've reversed.

These are some good points. It does get better with time and practice. The only thing I would add is, when using soap and water to clean the area, use a soap with no oils in it. That can leave a film on the skin and make it extra hard for anything to seal to it. And use plenty of stoma powder to help the skin heal. Just remember to remove the excess powder. I use a patting motion so the excess falls off before applying any new seals/wafers. Hang in there as it does get better. I think most, if not all, of us have been there.

I had my urostomy surgery on Nov 13, 2023. The next six months were pure hell. My home health care nurse knew absolutely nothing about urostomy or ostomies in general. They kept ordering the wrong pouches. The bags would not stick to my skin. I leaked all the time. I got contact dermatitis, which led to infections. None of the products, powders, liquids, or barriers worked for me. Once my daughter had to tape a glad bag over my stomach because they (the home health care) ran out of bags. Probably because I was the only ostomy patient they'd ever had.

The resources they sent me home from the hospital with had inaccurate information. So after four months of tears, anxiety, and frustration, I searched and found a wound care nurse who pretty much saved me from a nervous breakdown. We found the only product that works for my urostomy and skin is Urostomy-Bond III from Amazon. It's expensive, $38 a bottle, and insurance doesn't cover it. I still get leaks occasionally; if I sit for a period of time and stand up, the barrier breaks. If I'm sitting on the floor leaning over too much, it breaks. Little frustrations like this.

Now I'm at a loss because I've had three PAs tell me I have an infection and put me on antibiotics. I saw two urologists who told me, "No, you're fine." That bacteria is expected in a urostomy. I drove one hour to the emergency room Monday night because my stomach was peeing blood and urine. My bag was full of it. I got no help. I went to urgent care Tuesday, and they sent me to a urologist. They told me everything was fine. I need to see a “contagious disease” specialist to find out why I keep getting all these “infections?” Wait a minute? I have an infection; no, you don't have an infection? Plus, I already went that route before I had my urostomy surgery, and he tested for everything and couldn't find a cause. Subsequently, I had a total hysterectomy and radical cystectomy. Two days later, I woke up, and my pouch was full of blood and urine again.

So what do you do? Who do you trust? Why aren't medical professionals, especially urologists, educated about this “life-changing” surgery? Right now, I'm done with urologists, urgent care, and ERs.

Sorry for this being so long; you can see my frustration over the lack of care and providers I've received. If you're going to perform this life-changing surgery, PLEASE have as many available resources and urologists available to help us!

TY tried and failed.

There are a lot of great suggestions here. One that works for my wife's recessed ileostomy stoma is a barrier ring from Hollister infused with ceramide. Use the crusting technique first, then the barrier ring, then the pouch. We've been on this journey for two years, and we're still learning. My hope is your learning curve will be shorter. Also, colloidal silver (soak some gauze in it and rest it on the inflamed peristomal skin for a few minutes during a change). You can also try a stoma genie when you do that to keep the output from dirtying the gauze. Good luck!

I know it's daunting for you. Every stoma is different. Surely there is a stoma nurse on hand to help you?

I personally have never gotten more than 24 hours of use out of a bag before it leaks or stings my skin so badly. A lot of days I change it 2 or 3 times. I have had it for 20 years, and as the shape of my stomach changes, so do the products I use. Making sure the skin is dry before adding a flange or bag is imperative. I use a cold hair dryer to achieve this sometimes. Bags don't stick to powder on the skin, I find.

Best of luck!

It sounds like your adhesive is failing. Given how hard it was to find something that worked, you probably don't want to experiment with other things.

Maybe try an ostomy belt to help hold the appliance on the skin. I like hernia support belts, but even a simple belt that attaches to the wafer will help. Also, be careful to keep the bag drained. Empty it at 1/3 full. Any extra weight in the bag will strain your adhesive and make it more likely to fail.

SusanT gives you the same advice I would give you, and it is excellent. I have an ‘innie' stoma that is in a fold of my stomach, so I empathize with your challenge. The only thing I would add is that I have used sheets of wound-cover stuff cut to size to protect my skin when it erupts. EXUDERM LP is the thinnest, but I've also used the Coloplast Brava protective sheets, both cut to fit the inflamed areas. They are made to adhere to weepy skin, so yes, you put the sticky side on your skin and the non-sticky side is what the bag will then adhere to instead of your skin. When my skin is this bad, I do change it every day or every other day just to ensure that my skin is healing. At first, I tried to cover the entire area, but that didn't work for me because of the folds in my belly, so I cut pieces to fit. I also found that Convatec has the ability to set you up with a video call with an actual ostomy nurse, who took one look at mine and said, "Oh, this is what you need - and by the way, let's measure it while I'm on with you so we can be sure." Like I said, mine's in a fold, so it's a challenge to even see it; I'm using a handheld mirror propped up on towels to see what I'm doing! Good luck!

The one-piece bag you used is terrible; it has lots of problems, like you can only use it for 3 days. I went to the two-piece click with a belt, stoma powder for damaged skin, and Cavilon no-sting barrier spray. Let it dry, add a barrier ring, then use the bag and belt. All products are Coloplast. I do 7-day changes; all is good. I threw my one-piece bags away. You might have luck using barrier paste.

Still working and still free, that's how I got the video call with the ostomy nurse that helped solve my problems.

You have been given loads of great advice, and I can hardly add to it. I just want to say, I feel for you and hope you get things under control quickly. As JB said, the right products can really clear up skin problems quickly. You may need to experiment with several different products to find a system that will give you a good seal for an acceptable time period. I wish you the best of luck, and keep in touch with your progress.

Terry

Excellent point. I found that I appear to have an allergic reaction to the adhesive in most Hollister products, while the Convatec works beautifully for me.

All have leaks; unfortunately, mine most often happen to me at home. I use seal rings before putting the bag on, but it will still leak, not as much as I have found out.

Mine has been runny too.

I think it depends on what you eat, too.

Out and about, I do take a spare emergency bag full of stoma items I need just in case; so far, it has not happened.

Trying to figure out solutions, too.

Products known to help as factual statements from members regarding leaks:

Immodium.

Special flange convex.

Belt connecting to flange.

Dry skin.

Protective spray.

"O" ring. Cera brand works for me.

"C" strip extenders aka half-moon strips.

Paste.

Warming up the piece before you apply it to your skin. The sticky part.

Wow! That looks really sore. When I had so much trouble at the beginning, my stoma nurse was a great help. I had cellulitis and needed antibiotics because the acid ate into my skin, so beware of extreme pain like a terrible sunburn. One thing is it's not a contest to keep your bag on longer. There are times when you need to change it more often. At first, I tried to increase wear time, but it just aggravated my skin, so I usually change every two to three days. Ask the nurse about using Nexcare Tegaderm dressing to protect your skin.

If I get any kind of irritation on my skin, the stoma powder clears mine right up.

Hi

I am so sorry you are experiencing this.

Can you ask to see a skin specialist?

After 6 months of painfully sore skin, I was referred and given steroid injections around the site.

It worked wonders for me.

I wish you the very best.

I recently had emergency surgery due to a perforated bowel and abscess from diverticulitis and have been dealing with similar issues to what you've mentioned. I had a severe allergic reaction to the adhesive on Coloplast bags (the ones meant for sensitive skin, as well as other Coloplast products). One of the worst parts was that the ostomy nurse in the hospital kept telling me I just needed to get used to the bag. Well, I ended up not being able to keep a bag on and ended up back in the hospital for another 5 days as a result.

I have found Hollister bags have been tolerable and are not having the same reaction on my skin (which was burning and itchy), which has helped; however, I am still having reactions to a lot of adhesives, so I don't put anything near the skin on my stoma without first testing it on the other side of my abdomen.

Unfortunately, with the skin that angry, there isn't just one easy solution (at least there wasn't one for me) - first, I need to stop putting things on it that are irritating it and second, find a way to keep a bag on while also getting the skin to heal.

Also, my stoma is significantly retracted, so leaking is almost guaranteed… we are hoping every day that it just keeps on working and doesn't pull in further, as the doctors do not want to go back in anytime soon due to the significant risks that would pose.

Anyway, I am still having issues, but currently, I clean the stoma/area with just warm water, will use Domeboro on it, then wash it off if it's irritated. Once dry, I put stoma powder wherever it's red/irritated (don't cake it), then do skin barrier spray to crust the powder. Then I lay back and pull the skin up to do the rest so the stoma skin is more of a circle and there are no folds. I then use hydrocolloid strips all around the outside skin of the stoma (because I'm having leakage problems and the significant retraction), then use the Adapt paste along the bottom edge of the stoma (doesn't seem to be bothering me - Convatec paste I reacted to and cannot use), then holding the skin up, I put the convex Hollister bag on (it has 2 different ways of adhering to the skin - directly around the stoma, then you rip off other pieces for the part that adheres to the outer skin - this provides for better adherence), then while holding the skin up, I press on the bag/adhesives with my hand or heat pack for 5-15 minutes. Then I put the belt on.

This has not been perfect, but it has been the latest experiment to keep the bag on at least 2-3 days without leaking and to get my skin to heal, and my skin is significantly improved.

I know this was super long, but hopefully, it helps you in some way. Take or leave what you will, but your picture looks like mine did, and it was an allergy to the adhesive, which at first, nobody believed, so I wanted to share. Hoping something in my experience helps you, as it's been a really rough 5 weeks and counting for me, and I don't wish these issues on anyone.

I feel for you with this. My stomach is in a similar position and state. I have to change every day; otherwise, my skin just burns. I will stand in the shower for as long as possible to allow air to get on my skin and try to stay as long as practicable without applying the stoma bag.

This has made some difference but means cleaning the shower well and timing issues so the stoma is not overly active.

I have started applying powder for my skin (this is helping), but the best thing I have found is applying the ring to the stoma bag and not the skin first. This allows you to really secure the bag and stop leaks that way. All the very best 🩵