Out of the Bag: Dealing with ostomy leaks

“Leak” is a 4-letter word

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I get it. Leaks are scary. They are perhaps the scariest part of having to get an ostomy for many people. And the worst part? Leaks happen.

If you have an ostomy for any real length of time, I don’t care how careful you are or how often you check and/or change your bag, sooner or later you are going to have to deal with a bag leak. But the good news is, it doesn’t have to be a big deal.

I got my first leak about a month after getting my ostomy. It was one of those where I could smell it a little and I was close to home and able to quickly change it. Since then, I go through long periods of no leaks at all and then suddenly I end up with a leak every day for 3 days straight. Then it’ll go back to a long period of no leaks. I can never find any real reason for it, but I’m aware that it’ll happen from time to time.

I’ve mentioned before that most of my leaks, at least bad leaks, happen when I’m sleeping. Other than that, I tend to get a pretty good heads up that one is coming. The area around the stoma will often start either itching or burning. However, even then, it’s hard to know how bad it is or how quickly you need to change the bag. I am not the type to rush and change it right away, especially if I just recently put on the bag. This is mostly because my skin gets irritated when putting on and taking off a bag too often, and it’s just my personal preference to wait and see for a little while if it’ll actually turn into a leak or if it’s just right there at the stoma. However, I must add that even if it doesn’t form into a full blown leak, leaving output around the stoma can still really irritate the skin. This is something that you’ll have to figure out what works best for you.

leaks leak output ostomies advice tips tricks stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomyIn my experience, there are 2 main types of leaks: those that start at the stoma and move out, and those that start at the edges and move in. Most often for me, it starts at the stoma. Now, this next part is going to depend a lot on your output. My output is very thick, so it can get under the wafer and start pushing through. I rarely deal with liquid output, so I don’t have much experience with those types of leaks. But with the thick output, you can often feel the wafer sort of pulling away from your skin. It’s at this point that I know I need to change the bag as soon as I am able to, but I don’t necessarily need to do it that instant. I usually can see the output underneath the wafer, but not at the edge just yet.

But sometimes you don’t get this heads up and you only realize you have a leak once it has made its way to the outside and it’s running down your stomach. Thankfully, with my thick output, this only rarely happens out in public, but this is what happens when I’m sleeping.

I do have some tricks that may help with this, like wearing some sort of wrap. I don’t do this on an every day basis, but there have been times that I have had a leak and the wrap kept it more confined. Also, keeping ostomy supplies with you can bring some peace of mind, but it is sometimes difficult to do this. I don’t prefer to carry them around in my purse (and of course that won’t work for the guys), but leaving them in the car can ruin the wafers if it gets too hot. You can keep some stashed away at work or a family member’s house that you visit often, but otherwise, I tend to only bring things with me if I know I won’t be able to run home easily. Another hack I have found is using a large square bandaid or medical-type tape to close up the leak area. You can keep something like this with you to help out in a pinch and give you more time to get to where your supplies are.

And then there will be times that the edges of the bag start pulling up and it’ll move in towards the stoma. These tend to be easier leaks to deal with because it usually takes time to pull up all the way towards the middle. But it has happened to me before where I wasn’t able to change before it got that far. This does usually only happen at the top of the bag, so it’s not actually leaking out. Patching it up with some tape or a bandaid usually gives me enough time to get it changed.

I do realize that leaks don’t always happen like this and there may be times that someone will have a much bigger leak and, unfortunately, a much bigger mess. This is where I again recommend having a stash of supplies (whether a new bag or something to patch it up) that you can use, at least to get you by until you can get home. And I don’t do this personally, but if it makes you feel more confident, keep an extra set of clothes in your car.

So the bottom line is this: Leaks are a part of living with an ostomy. But with a little preparation and keeping a level head, it doesn’t have to be something to live in fear of happening. Listen to your body, pay attention to how your stomach and surrounding area feels and you’ll learn when  things don’t quite feel right. And of course, there will be times it may still sneak up on you, but that’s when not panicking becomes helpful.

How do you prepare for and avoid leaks? For those with more liquid output, how has your experience been different? Any tips for handling leaks when you’re not home?

93 thoughts on “Out of the Bag: Dealing with ostomy leaks

  1. Sandra Williams

    I’ve had a diversion Ileostomy since 6/14. Had lots of leaks until I got a convex wafer. Just got home from the hospital. Picked up a bug somehow and had my bag actually explode twice from sudden output. It was horrible. Even happened in the ambulance and they looked TOTALLY unprepared to deal with it. Poor EMTs!! Doing a tad better now but it was a super bad, emotional experience.

    Reply
  2. Marie Colantoni Pechet

    I have had a few leaks. Usually they are from the output somehow getting under the wafer. The biggest one was when I took the kids sledding. I had sudden output and no bathroom nearby. It just wouldn’t stop! When I finally got the kids and the dog to the car, it exploded. Thankfully the kids thought it was the dog but what a mess! I’ve also had leaks like this at night (even when the bag wasn’t full).
    More recently, I have had leaks between the wafer and the pouch, where it leaks through there. I try to make sure they are firmly attached but it happens nonetheless.
    Thankfully, I’ve either been at home or nearby and went home to change them.

    Reply
  3. Bernie

    I was diagnosed with Bladder Cancer in 2008. Had Bladder removed in 2009.
    I started having trouble with Stoma last summer(2014) and had stoma revision surgery Jan 9,2015.
    I have had bad leaks ever since.Extremely uncomfortable when urine gets under wafer. Working with Stoma Nurse(unsuccessfully) to fix problem. I am just about ready for a medical leave of absence at work. And mental breakdown. Life is not good now. But I do not have cancer!!

    Reply
    1. Lisa

      I have the same problem with my Ostomy….I’m have a bad stomach from 2 repairs and not enough intestine. I’m at a point where I am having blowouts 3 4 and 5 times a day…I’m allergic to adhesives and my skin under the wafer is destroyed…I’m literally pulling layers of skin off and bleeding so it makes it even tougher for the wafer to stick..my output is pretty much liquid always so the blowouts are bad…along with the anxiety it causes I’m pretty much homebound

      Reply
      1. Kelley Jones

        I had allergic reactions to all bags. I now spray flonase in my palm
        and rub it where the bag will go, let it dry use medical adhesive and it sticks.

        Reply
        1. Catherine pitman

          I keep having allergic reactions to the pouches. I use coloplast convex mio pouches as my stoma is very flush to my belly, and find them really good mostly. My stoma bleeds quite a lot when changing the pouch, I keep smelling mine and am getting paranoid also I’ve just found out I’ve a small hernia on the stoma site and am awaiting an appointment to see what can be done.feeling quite anxious. Sometimes I can have a pouch on for up to six days wiuth no problem and then have to change maybe four times a day. Hopefully out will work out, at least I’m here. Its been juyst two years since I had my emergency ileostomy, I’m still learning, hopefully I’ll get it right soon. Good luck to you all xx

          Reply
          1. David Gardiner

            My thoughts are with you. Hope it will all work-out well eventually . I know I’m ‘fortunate’ , as I’ve had very few problems in the almost 10 years , I’ve been an Ostomate .

      2. K

        I’ve had some small problems with skin irritation. stomahesive powder, orabase paste and silesse skin barrier is a cocktail that worked for me. I don’t know if it’ll help, but I thought I’d mention it. hope things improve!

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      3. Monica

        Lisa, I had a temporary iliostomy for a year & the surgeon placed the stoma too close to my midline incision & it riped from the Stoma to the incision & it eventually got so bad it was open wound including blood so the wafer would not stick & it only got worse. I saw an excellent stoma/wound nurse & she showed me how to separate the wound from the stoma & it healed. If your still having issues email me @ MonicaARome@yahoo.com & I will try to tell you how it’s done!

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      4. Reg Phillips

        Try Duoderm 15cm square extra thin waters direct on the skin & your bag on to that
        Ensure that the wafer is flat to your skin with no air bubbles
        I also use Convatec two piece system with lugs for a belt on the flange for extra security
        Good luck

        Reply
    2. Helen Raines

      My sister had surgery for colon cancer on March 27th. The Dr. had to do an emergency ostomy and we have yet to get a bag to work. We are at our wits end. The nurses at the hospital couldn’t get one to work and sent her home with a good luck. The home health nurses don’t know what to do and the ostomy nurse is at a loss. He put it in the crease of her stomach and the stoma is level with the skin with the opening facing down. Her skin is now like hamburger and can’t even try to wear a bag. Any ideas.
      We just feel so alone right now and so angry at the Dr. He is offering no help other than we can reverse it in 10 weeks. I just don’t know where to turn for help and she is in so much pain.

      Reply
      1. Linda pilcher

        I was beginning to think my sister was only one with this problem. She went to skilled nursing home from hospital . I thought it was maybe just unskilled nurses. Don’t know what will happen when she goes home. She saw a stomach nurse for first time today and hoping she can get things on track. Prayers for you that things get better there

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  4. Debra

    I have had my ostomy for over 10 years. then 8 years ago I had a 6 organ transplant .And at UPMC they changed the way I do my ostomy .They gave me Allkare Protective Barrier Wipes. And I use them after I put on the ostomy power around my stoma and then the wipes have helped a lot from my ostomy leaking. I wear Convatec ostomy stuff. Before I started using the wipes I had so many leaks .Every were I went I had to take all my ostomy stuff with me. Now I have had very little trouble since using the barrier wipes. This may help everyone that has leaks.Yes before I had very big messes . I think the barrier wipes gives my ostomy a better seal.

    Reply
      1. SHIMA OMIDVAR

        hi, how and when you usually use that barrier wipes? because im using too but it leaks everyday 🙁

        Reply
    1. Janice

      I agree with Debra. Leaks were making my life hell. I was afraid to go out in public…until I stopped using all the adhesive such as strip paste,tube paste powder and spray. I just use the barrier wipes and I don’t need anything else. I tape around the bag and I am good for a week.

      Reply
      1. David Gardiner

        Hope I’m correct , but I think the Barrier Wipes are to protect the skin around the stoma , from possible harmful affects from ‘ output ‘ from the stoma .

        I don’t think it’s designed to prevent leaking , but it may help , if the skin is in good condition .

        Reply
        1. Dave

          I think it helps a little, but if you don’t clean the barrier from the last application really good it is more apt to leak. Does anyone feel that they have to support their bag as soon as they feel weight? I find myself doing all the time

          Reply
          1. Sharon Corl

            Interesting you should mention supporting your bag. I have noticed when I am more active, that it feels better when I push my hand up against the convex wafer in bag to hold it in place more. I do wear a belt 24/7. I have thought about wearing a girdle or spandex to help hold things in place more. Have any of you done something like that or tried something else?

      2. Joyce Joyal

        I use barrier wipes all the time. The wipe simply puts an invisible coating that allows the barrier to adhere better. My stoma is quite reseesed, therefore I also use an Eakin cohesive slims and a deep convex barrier. I use SenSura Mio deep convex ostomy barrier. I rarely have leakage problems. If I do it’s always on day 5 or longer. My new routine is not to go beyond 5 days. Hope this helps

        Reply
  5. Ce Katz

    I use Brava Strips which r waterproof and they help contain leaks wherever they begin. Thx for your good advise.

    Reply
  6. Elizabeth Booth

    i’ve had leaks at least twice a week for a few years but i went to see my stoma nurse on thursday and she recommended some new products, touch wood not a single leak yet. i’m using a convex bag stoma paste to keep the bag on and brava tape to secure the edges

    Reply
    1. Leslie T

      That’s exactly my strategy. Convex wafer, paste around the gasket (opening), and 3M Cavilon wipes to make a sticky seal. I also use Welland adhesive remover to clean all the products off between changes. I have a temporary ileostomy, since 9/2015 as part of treatment for Rectal cancer.

      Reply
      1. patsygazaleh

        Lisa, this is what my ostomy nurse told me to try. I spray flonase spray on a piece of gauze and wipe it around the stoma. This is like a liquid prednisone. Allow it to dry, the put some stoma powder, I use Reliamed, but most powders work the same. Anyway, after dusting some powder on your skin around the stoma, use a barrier wipe and lightly crust the powder. I usually do this 2-3x’s depending on redness or bleeding around the stoma. I also use a barrier wipe on all the skin that will be under the wafer. Make sure that all is dry, then attach your device.

        I am unable to use the rings and the stoma paste. My skin just doesn’t like them. I also will use a small strip of Aquacell, with flonase spray, to cover the reddest or bleeding area. Then I take a piece of duoderm, cut it to fit over the piece of aquacell. After you put that on, take a barrier wipe and swipe it over the piece of duoderm. Then I place my device over my stoma. I use Hollister 2 piece pre-cut to fit my stoma.I have been lucky, knock on wood, that my stoma size has been very consistent, so I don’t have to cut them to fit.

        I learned that the easiest way to keep your skin clean and dry if you have a lot of output that causes you to prep your skin repeatedly is to use a tampon. This temporarily stops the poop and allows you protect your skin. You do have to keep it stuck in your stoma with one finger, but you learn how to multitask quickly.

        Everyone uses different things that work for them. It does take some trial and error. My best advice would be to talk to your ostomy nurse. It may take several conversations, but her job is to make the transition process easy for you. But don’t be afraid to try different things.

        Reply
  7. Reg

    I wear a Convatec two piece system which has lugs on the flange to accept a belt. I always put a layer of Stomahesive paste on the Karaya washer. However I still occasionally have leaks, dependant on how active I have been and how much ( usually too much ) that I have eaten.
    I use the two piece system because I can’t find another system that will take a belt.
    Incidentally I have never seen the point in a two pice system because in my experience I have never had a failure of the bag only ever the flange. I also think that you would need a washboard stomach to refix a bag, safely, to a flange adhered to your belly

    Reply
    1. Sharon

      Hollister had hard and soft convex bags that use a belt. The hard convex one piece drainable pouch is called Premier 1-Piece Drainable Pouch. It cuts to fit 1-1/2″. I am experimenting with that one and a Coloplast 2 piece system to see which one works best. My body has been challenging since they tried to do the reversal and it didn’t work.

      Reply
    2. Joyce Joyal

      The reason foe two piece is to allow you to change the pouch without having to remove old barrier. I change my pouch every two days

      Reply
    3. Joyce Joyal

      Attaching a clean pouch to existing flange is effortless. I have a very”fleshy” stomach. No washboards here and never have a problem

      Reply
  8. jean henry gade

    dones anyone think like I do that the companys that make the bags could do a better job making them so we dont have so many leaks
    Or is this a way they sale more???
    Im lucky Im 85 and this is new to me since last year
    Im sorry for younger people but glad you all seem to handle it
    just not a happy grama

    Reply
    1. Cassandra

      I don’t think that’s the case, making a long wearing skin safe adhesive product that’s constantly around moisture is a tough ask. Besides, if they make them poor quality on purpose, another company will just swoop in with a better product.

      And today’s products are a hell of a lot better than what they used to use.

      Reply
  9. jane

    I have had my ostomy since about the end of July this year. Due to the large hernia thats developed underneath it, I now have a large cone shape ending at the stoma. I have had so much leaking I feel like giving up. I have leaks an average of one a day. It is rare to go two days with out having to change.
    For me, the output gets under my seal and pushes it up. It happens a lot at night, but also anytime in the day.
    I have, and do, use the barrier wipes but I haven’t noticed a difference with adhesion without them.
    Maybe I need some of that stoma paste??? I use a one piece convatec product. The two piece type were even worse for popping off on me. Maybe I should try a convex shape? hmm
    thanks for listening, and for all your input above!

    Reply
    1. Christine cole

      try hollester flex flang 14041 i believe off top of my head…..they have 3 i like actually for my herniated stoma

      Reply
    2. morganmanlove

      Try convex rings for sure. Hollister makes them in several sizes and they’ve been a life-saver for me since I have a telescoping stoma. Sometimes it’s almost flush with my skin, other times it sticks out an inch or more. I worked with the ostomy nurse at CTCA in Tulsa and she recommended the convex rings as well as barrier strips for the outside of the wafer. I use Coloplast Brava strips and they work well and don’t irritate my skin too bad at all.

      Reply
    3. Cassandra

      Have you tried something like the Eakin seals? They go under the baseplate/flange. They’re basically a more solid and easy to use version of stoma paste.

      Reply
    4. Patricia

      I have had that issue for over a month. The area now has a yeast infection. I hope to have this reconnected in April. I stay home because the leaking, large messes. I do have ovarian and colon cancer. I am missing my two granddaughters very much. I am hoping and praying the surgery will give me my life back. I use the wafer, barrier spray, paste, attach pads to check the overflow, plastic and a diaper, and still leak all the time.

      Reply
    5. Janice

      I think you should use the convex pouch and the mouldable seal around the wafer. I know leaks re depressing and steal your confidence. Good luck!

      Reply
      1. Lisa

        I do have convex wafer along with an additional convex ring that sticks on top of that…been using the coloplast paste sticks which helps but because I have an indentation near my stomach I have to fill it in with paste also and it’s hard to fill sometime

        Reply
    6. Lisa

      I’m having the same exact problem…liquid gets on the ring and lifts it right off… even the Ostomy nurses are at a loss as to what to do…I see my surgeon next month but I doubt there is anything she can do

      Reply
    7. Joyce Joyal

      I used to have problems at night with pancaking which led to leakages. I discovered if I add a little air I the pouch just before going to bed, there is space for output to dump into pouch. I also try to sleep on my side to allow for easier draining into the pouch. Hope this helps

      Reply
      1. David Gardiner

        I too have a bit of a bulge where my stoma is , but I’m sure it’s not a hernia , as it’s been like that for years now & I compete in several strenuous sports & I’m always aware of not putting too much stress om that area . It’s almost 10 years since my op. What I do find that helps , is making about 8 or 9 ‘slots’ around the base plate , so it molds over my body much easier than trying to mold a flat baseplate onto my abdomen . This CERTAINLY helps ! Takes about 30 seconds with a small pair of scissors , to cut each plate . I usually do the new box at once , & that’s me ready for about 20 days . I use Coloplast . There is a brand that is ‘pre-cut’ , but I suspect it is patented ! I still use the Coloplast brand after 10 years & I’m happy with them ! Never neede to try any other brand . Good Luck !

        Reply
  10. Anonymous

    Hello everyone. I have an ileostomy (10 years) and I have had my share of leaks. I usually got a few days to a week before a leak, but sometimes the same day! I have tried different appliances, pastes, Eakin Seals, etc. I also used medical tape on all sides of my flange. Some things did help a bit, but the leaks still happened.

    Over time, I found what works for me and boy, does it work.

    BREAKTHROUGH 1

    I discovered an appliance with a “moldable” flange which adjusts to the size of my stoma and fits very closely – amazing technology! Unlike the pastes or the Eakin Seals, it doesn’t disintegrate in a day or so, even though it is pliable. With this, getting a week or longer was no problem. Not to say that I never had a leak. A small leak would be absorbed into the moldable flange and it would look like a “turtle-neck” around my stoma and contain the small leak.

    Here is the product I use (I don’t work for them):

    I use a two-piece system. Convatec Sur-Fit Flanges with “moldable” flange, used with the Sur-Fit Pouches that fit it.

    I position the flange/wafer like a “diamond” (one point of the square at the top, one at the bottom), just because it works better for me that way. For a long time I still used medical tape around all sides as an extra precaution.

    BREAKTHROUGH 2

    I found a product called Aqua Seal (there are a few other brands out there) which is worn on top of the wafer. It is a thin polyurethane film with adhesive on one side (looks like ultra-thin plastic) and was designed to protect the wafer from getting wet when swimming or taking a shower. What it also does is it holds the wafer firmly in place and somehow makes it fit VERY snugly to the body.

    The first time I tried it out I got two weeks without a leak! Also, when I did have the leak, it was minimal and “contained” (I could feel an itch, which went away). I only changed the appliance because I wanted to see what my skin was like under the wafer.

    The next time I used it I got two weeks and three days before changing, which is now typical.

    As I type this – I last changed my appliance Thursday, two weeks ago and today is Monday – that is two weeks and four days. There is currently NO leak. I will probably change it in a day or two, just because I should – no real reason to, unless I get a leak tonight.

    Reply
  11. Andrew M

    I’ve had an illeostomy sine 2012, but just had another surgery 3 weeks ago that required the stoma be redone. It used to be an “outty” but not it’s flush with the skin. This combined with watery output is causing my bags to fall off like crazy. I went through 7 bags yesterday. Before the surgery my bags lasted about 3 days on average.

    After the surgery my skin unfortunately “folds” along a just-about horizontal line across the stoma. This fold stretches or gets worse as I sit/stand/lay, so no matter what position I try to accommodate when I put the bag on, it either pushes or pulls away as I adjust throughout the day. I also still have a vertical midline wound from the abdominal surgery that is healing that limits the bag placement (I have to cut the bag adhesive short toward the center of my body so it doesn’t overlap the wound).

    I find that the powder and “3m no string barrier wipes” make the seal less reliable rather than more, so I only use it sparingly. The paste seems to work ok for about a day or two, but then decay. I’ve been using some of the moldable rings (flat though), but I’m not sure if they help. Once the liquid gets under the edge it seems like a matter of a few hours before it works its way out somewhere and a large (1/4 inch or so) section of the bag just peels off. I do use brava adhesive bands, and those help a lot, but I don’t have any extra room to use them near the wound now.

    The bags I’ve been using were coloplast flat bags, which were costing about $2.50 per. I’m going to try the convex convatch bags suggested here, but at ~$10/bag I hope they hold for several days. Is there a good way to get these bags at a discount? In bulk or otherwise?

    Hopefully this works. I went from being comfortable if slightly paranoid before this surgery to feeling completely helpless now. Not only can I not leave the house without worrying my bag will fail, I have to sleep with towels wrapped around my ostomy while lying on water proof pads because it leaks virtually every night. And waking up every morning with laundry and clean-up is not encouraging either.

    Reply
    1. Sharon C

      I had somewhat of a similar experience. I went in to have my ileostomy reversed and became toxic. I was bad enough that this time they had to open me up to clean me out, and give me back my stoma. Things are so different this time from the first time I went through getting my colon taken out and getting ‘Pez’ – said I named it. My incision on the left side of my stomach made it so difficult to dress the wound and keep the bag on. They’d sent me home with a wound vac and that same night it failed and I had to stop using it. I finally figured out how to pack the incision and then get the bag to stay on. I’m still trying to figure out what works. I have to change my bag every 2 days because the barrier ring seems to break down so fast – even an extended wear one. Reading all of the experiences here helps me know that I’m not alone. Keep talking to the ostomy nurse but ultimately we have to figure out what works best because it’s our bodies.

      Reply
      1. Heidi Weber

        Your experience sounds almost identical to mine. My surgery was 11/4/16 and I too started with a wound vac because my wound was left open to heal from the inside out. I have an iliostomy and my stoma is so close to the wound that the wound vac would draw on the iliostomy seal and fail. Once it happened 3 times in one day and over a 4 day holiday weekend I ended up in the emergency room 4 times. I still have nurses coming every day to pack and dress my wound with mesalt and calcium alginate. I went to see a stoma nurse and they used a larger ring and a convex bag with a belt but I still will have leaks. It rarely lasts more than 2 or at the most 3 days before it leaks. My skin underneath gets raw. I too have a crease or valley that runs horizontally from the wound and over to the stoma and that is always where a leak occurs. It is so frustrating and disheartening. Have you found anything since you posted this comment that works better for you?

        Reply
        1. sharon.corl@yahoo.com

          Hi! I worked with a Coloplast Product Specialist who I found by way of a site a few months ago. The site does a ‘body check’ where you fill out facts about your stoma and ab area to help determine what samples should be sent to you. I still don’t always have 100 percent success, but it has gotten better. It is frustrating but it’s a matter of trying different products. Try http://www.coloplast.us/Sample/Care or http://www.coloplast.us/Sample/Care and see if you can get samples. I also recently found that my diet needs changed and that has already helped some when I follow up. I can’t seem to put any weight on and food goes right through me. My output was always runny and the Nutritionist suggested I have an intolerance to fructose. So by rearranging my diet including going more gluten free, I have noticed improvement. I also met with a WOC Nurse who had some samples sent to me to try. It was helpful to have her review all of the products I tried and currently use to get her feedback as I took a sample of everything! It’s so experimental and you have to be patient! And, always remember, you know your body better than anyone so don’t take no for an answer. They kept telling me I should be using flat pouches, and every time I did, it was a nightmare. The nurse, etc. are always surprised that I have to use a very stiff convex wafer or wafer/pouch. I bounce between a Coloplast 2 piece system and a convex 1 piece pouch from Hollister. What I use is based on the appearance of my stoma and how it’s behaving. Most time, I do well but I do have days where it’s a mess. BUT, it is getting better. I hope my rambling helps!

          Reply
    2. David Gardiner

      I am surprised you have to pay for your Supplies ! I live in Australia , & luckily , we receive almost anything we need Free of Charge , apart from an annual membership fee of about $50 , from our ”National Health Service ”. Seems like we are indeed , fortunate ! Our Ostomy Society here in Perth , Western Australia is run entirely by volunteers , & our state has around 4000 members who need supplies , but we ‘ get by ‘ with about 100 willing volunteers . I always do about 3 hours on a Monday , but many do several days & much longer hours , but I’m sure my contribution , helps !

      Reply
  12. Lori R

    I change my barrier/bag 4-5 times daily. We don’t have an ET nurse in our area.
    I have contacted all the major ostomy product manufacturers with no luck. I have tried eakin products, the barrier strips, paste, turbot glue, the colloid pads, and any other product I have left out. I have used convex barriers and flat barriers also with no luck.
    I used to get 5-6 days wear time up until 3 years ago; I’ve had my ileostomy since 2002.
    Please accept my apologies as I am not a grumpy person; I’m just disappointed because you cannot work outside the home having to change so many times daily, plus the expense as we cannot afford it.
    Thank you for listening.
    God Bless all

    Reply
      1. Brendan Magee

        Hi,
        Having to deal with 4/5 leaks per week would be terrible, but 4/5 leaks per DAY must be devastating!
        I had my ileostomy in 2013 and I was determined to not allow it take over my life. I tried to find devices to allow me to live a ‘normal’ life but none of them were effective. So, I created my own! The initial plan was to simply allow me to wear my normal clothes, but, an unexpected advantage was, it prevented leaks. I haven’t had a leak since wearing it, and most of my customers report the same. It is so effective I change my bag only every 5/6days.
        The device is called Stoma Protector and is available on http://www.stomaprotector.com
        Also, as a fellow ostomate, I offer a 45_day, full_use, money_back, guarantee, so you can try it out with any obligation.
        I would love you to try it out to see if it helps you!
        Regards,
        Brendan Magee

        Reply
  13. D Crabtree

    Had bladder removed due to cancer. My body makes so much urine that the adhesive on the bag breaks down and I change bags as much as four times a day. I have no quality of like and am becoming a recluse. HELP ME PLEASE

    Reply
    1. Stephanie Hughes Post author

      I’m so sorry, D. Are you on my Facebook page? I’m happy to post this on there to see if anyone else has some advice. It’s easier to get responses there.

      Reply
  14. Larissa

    Hi all, I’m a fairly new ileostomy patient who would appreciate some advice from you ostomy gurus! Since leaving the hospital a month ago, I’ve we’ve tried Hollister’s 2-piece bag system with a flat barrier. We’ve tried both the moldable and cut-to-fit barriers. My output seems to break down the moldable material, so I’m only using the cut-to-fit barriers now, and we switched to a convex wafer because my stoma began to retract. The problem is that the opening to my stoma is right next to the skin at the bottom of the stoma, so output basically drips directly on to the skin. There’s not enough space between the stoma opening and the skin for a barrier to fit, so output gets under the barrier almost immediately and prevents a good seal for the rest of the barrier. We’ve tried barrier rings, paste and “crusting” with barrier powder and skin prep spray, but nothing will keep the output from the skin nor keep the barrier stuck to my skin. I’m not using any soaps, lotions, creams, etc. on the skin, so I don’t know why sticking has become such a problem. I don’t have access to a WOC nurse now that I’m out of the hospital, so I would appreciate anyone’s advice on how to prevent this type of leak. I’m having to change appliances 2-3 times per day and am in jeopardy of losing my job because of so much missed work. I need a resolution!!! 😀 Thanks!

    Reply
    1. Patsy Gazaleh

      Try using half of a barrier ring and putting it under the lower part of your stoma. This will raise the bottom of your stoma, which should help with your issue. See how it works with only half of the ring. Try to keep your skin as dry as possible. I know this is hard with every thing that is going on, but taking care of your skin is important.

      I can’t use the barrier rings at all, but I do use duoderm strips and place them around my stoma. I cut them to fit, but try to keep the duoderm from sticking out under the flange. This will interfere with the sticky of the wafer. I use a barrier wipe on top of the strips to help the wafers stick.

      Hollister should have videos showing how to use their products.

      Hope this helps you.

      Reply
    2. Sharon C

      Your surgeon’s office doesn’t work with a team of WOC nurses? That’s disappointing. While some of the suggestions from my WOC nurse do not work for me, some have helped a little. Don’t get discouraged though because sometimes it takes a long time to figure it out and your body will keep changing too so that doesn’t help. I have supplies at work, in my car and a quick set to take with me where I need to go. I don’t know what kind of work you do, but hopefully you have access to the bathroom and can get there quickly. Have you tried soft or hard convex bags? My first stoma tipped over and the hard convex bag (one-piece) worked like a charm. Since my reversal didn’t work, now my stoma is different and I’m still trying to perfect the art.

      Reply
  15. D Crabtree

    I had bladder removed due to cancer in August 2015. I change urostomy bags 4 to 6 times a day due to large urine output. I have become a recluse never leaving the house. Can someone HELP ME PLEASE

    Reply
  16. helen

    I have had my ileostomy since Jan. in the area just right of my navel and my stomach is bulging terribly. Is this normal???

    Reply
  17. Judy

    More liquid stool flows into bag and is easily emptied.

    When there’s a leak:
    – bag is empty
    – even slightly thinker stool stays under the bag on my skin until it pushes out thru the seal
    – problem not the adhesive
    – problem seems to be thicker stool escaping around stoma under the instead of passing into bag
    – I drink 10 oz hot tea after each meal
    – eat 6 very sml meals a day

    ???? What to do

    Reply
  18. Gwen

    Judy, try using a lubricant in your pouch to help with the pan caking. There are commercial products or you could try placing some olive oil or mineral oil into your new pouch and rub it around well so it gets up to the top also

    Reply
  19. David Gardiner

    When I get my Coloplast 2 piece bags , I always use a small pair of nailclipping scissors to make about 8 or 9 slots in the baseplates , which adhere better to the shape of where my stoma is located . I have been in contact with Coloplast to ask if they could supply baseplates already ‘ slotted ‘ , but I reckon it may be ‘copywritten’ ?

    Also , for ‘peace of mind’ , I rarely go anywhere without ‘spares’, wipes etc ! I have done a lot of international travel , & so far , I’ve been fine ! I’m 71 now , & have been an ostomate for 9 years , & I participate in several really energetic sports . I volunteer once a week at our local Ostomy Association , packing supplies etc for my fellow ostomates . Our association , here in Perth , Western Australia is run entirely by volunteers, about half , being ostomates .

    Reply
    1. Lisa

      I’m so happy things work out so well for you… unfortunately I don’t have the same luck…I have soany issues with my stomach I’m lucky to keep the same wafer on for than one day…sometimes I blow 3 4 and 5 times a day…at this point I’m basically housebound…I have an appointment with my Ostomy surgeon next month to see if there is anything that can be done…. I’ve seen the Ostomy nurses a bazillion times and they aren’t able to help me either

      Reply
  20. april

    My ostomy nurse showed me a trick that helps me tremendously. When I put the wax ring on I mold it tight around my stoma. As tight as I can get it- no leaks for me!! This means cutting a piece out of it and shaping it around the stoma

    Reply
  21. K

    I’ve had that problem too, with too much output. I’d suggest having a doggie bag or some other small sturdy plastic bag with you. That way you can always go behind a bush or tree and empty the bag. Might be tricky in the winter, but I’m sure it can be done. You can even do it in the car. I fig the one advantage we have is that we don’t have to run to the bathroom anymore – we should use that to the max!

    Reply
  22. Tiffany

    I have been a long survivor of having a stoma. I got my stoma when I was 3 yrs in 1995. I still haven’t tried a lot of the different products out there since my insurance is so limiting on how much I can receive. I do know one thing what works for awhile ends up changing in seconds. I used to be able to handle a bag staying on for about a week for a short period of time then that changed. Now I use up 80 bags a month in practically half a month. I still dont know what will work with my stoma being in a crater. I’ve tried talking to doctors about it but they seem to be interested in other matters than my own. I know it’s hard having hardly any money to work with and have this condition with trying to work to make money to pay for the place you live. Most glues I’ve noticed tend to not stay on long enough even with a tac cement liquid put on. So i’m at a loss. I hope the other people who have commented and are still struggling find something soon to help them because something can happen normally will and getting to the point of where I am at using stuff like hard plastic against your skin to get something to stay long enough til the next month’s order comes in hurts very badly and ruins your skin around the stoma making it red irritated and sting when you put anything on it. Good Luck to everyone who has the curse of living with a stoma. May you find peace. God Bless.

    Reply
  23. shaylene armendariz

    Ive had a stoma ever since 2014 and I get 4 boxes of wafers and 2 boxes of bags a month and for the last 2 months ive gone thru my supply in 2 weeks leaving me to go to the pharmacy and spending lots of money for a couple of bags or calling hollister and begging for a couple of samples they usually are really nice about it but the other day the guy had me in tears like he pays for them himself , finally I told him you dont know what its like till you go thru it yourself! I got a sample of barrier tape so ive been putting it over the sides of the wafer idk if thats hows you use it or not they just gave me a box with no instructions and I dont get on the internet often , so if anyone has any sugestions im open to listen!

    Reply
    1. Lisa

      Oh sweetie I can totally relate…for months I was having 3 4 even 5 blowouts a day…my skin underneath was destroyed and couldn’t keep a wafer on even with wound care…I also have an indentation next to my stoma…after trying just about everything and going to the ostomy clinic in found something that’s helped but I still get a blowout every one to 2 days…just not as many in the same day…I wear 2 piece Hollister convex wafer with an additional convex ring on top of that….I fill the indentation with the Coloplast strip paste and also use that as my seal. My insurance will only cover a certain amount also…my dr wrote a letter but it only gets me one extra box of wafers and bags…I’ve cried many a times to my supplier…I wish you the best…if you find something please post it!

      Reply
      1. Sharon Corl

        I can relate too. I don’t have blowouts more than once a day, but many times I change my appliances every day. It’s very frustrating. I too have an uneven ‘topography’ around my stoma. I don’t know what else to try. Sometimes it will last 2 or 3 days, but then I’ll got through a week or two where no matter what I do it’s not comfortable and I have to change it every day. Do you have a stoma that stands up much? Mine is very misshapen and not perfectly round and for the most part it doesn’t stick out much. It also changes shape a lot and telescopes. Anybody have any suggestions for that mess?!? I’ve had the most luck with the 2 piece Coloplast hard convex wafer and bag with the locking system. I use paste and use a hairdryer to try to basically glue everything down even more. But again, with the stoma being like a turtle and it’s so misshapen, it is so unpredictable. The other frustration is sometimes it will hurt around the stoma so the next day I will change it, and it won’t really be red or sore so I don’t understand why it hurt so much. Very unpredictable.

        Reply
        1. Lisa

          My first stoma was perfect but I herniated and have had 2 repairs done. Since then my stoma is all sucked down… I have to use a convex wafer with an extra convex ring…along with the indentation it just makes it so hard to keep my wafer on for more than a day …I’ve tried everything…plus I’m allergic to most adhesive so I can’t even wear tape or the Coloplast barriers that you can put on around the outside of your wafer to catch the leaks and give you time to take care of it. I’ve tried a bunch of different things…my insurance doesn’t covery Coloplast or hardly anything else either and I can’t afford to pay full price…have you tried the stoma powder around your stomach to help heal your skin? I used to use it alot but now I can’t cuz it makes it even harder to keep a wafer on for me…it does work really well though

          Reply
          1. Sharon Corl

            I am sorry to hear that you are having such a rough time. Fortunately I have good health coverage because I have been using the Coloplast products. Have you tried contacting Coloplast or Convatec to see if there is assistance? I mean we kind need the products to live a normal life. I use stoma powder as sparingly as possible because I want the barrier ring to stick to my skin as much as possible. Try putting a thin layer, then dab with a skin prep and then your barrier ring. I even use paste on top of all of that to protect my skin.

          2. David Gardiner

            I’ve been an ostomate for almost 10 years , & fortunately , I have not experienced any problems . I have always used Coloplast products , as that’s what was given to me in hospital , & I’ve had no reason to change .
            The only other product I use is 3M Cavillon No-Sting Barrier Film , before I apply the baseplate
            [ wafer ] . I’m in my early 70s , & I’m a very keen sports person , & participate in Cycling , Kayaking . & ‘ Power-Walking ‘, & usually change the wafer every second day . I wish you well !!

          3. Lisa

            Yes I did talk to Coloplast…they were very nice…she even kept up with me via email…I explained my problem and she sent me some samples but my insurance won’t cover Coloplast wafirst and bags…I do understand the paste strips…I’m on social security disability so my options are slim to none…had to have my dr sent an appeal hustle to get 1 extra box of wafers and bags which is not enough when I’m changing every day and sometimes 3 4 or5 times a day

          4. patsygazaleh

            I have had my illiostomy since 2014 due to Crohn’s Disease. My body was so worn out from fighting the disease that it took well over 2 years before I began to feel better. I had a wonderful Ostomy nurse who helped me. My skin developed pyoderma after my surgery and created a hole that came within a tissue of skin to compromising my stoma, Bessie, lol. I had to have a wound vac to fix that, but the tissue around Bessie is still misshapen can be very painful at times. I cannot use barrier rings or pastes, they just don’t help.

            To help protect my skin and help it to heal, I first use some gauze that has Flonase sprayed on it. Flonase is like liquid prednisone which will hep proitect your skin. I then use stoma powder and barrier wipes to crust the skin, spray the powder then dab with the barrier wipe. The ostomy device will stick better if the powder is a little damp. But your skin should be as dry as possible. I have 3 spots around Bessie, that are always red and sore, so I use a type of material called Aquacel, cut to fit over the spots, then I spray Flonase on the pieces of Aquacel and place them on the red spots. I cut pieces of Coloplast duoderm strips to stick over the Aquacel, then I place my ostomy device over that. This doesn’t always work, but I have had more success with this method than any other.

            There are medical supply companies that will fight the insurance companies for you. You may need medical records to back your claim up, but the medical supply companies should do all the work.

            I know this process is hard and long and demoralizing and frustrating. It took me a long time (2years) just to accept that my life had changed and that Bessie has more control over me than I do.

            Please contact me if you have any questions or just need someone to talk to. I’m at patsygazaleh@yahoo.com if you want to contact me directly.

          5. Sharon Corl

            I am so glad patsygazaleh@yahoo.com joined in this conversation. Lisa I hope her advice can help you. There’re something interesting tips! A side note, this is very frustrating. I don’t get embarrassed by it and I refuse to be demoralized by it. I have had trouble with my body healing too. My stoma is Lily and I have a medical condition, and like those who have cancer and other issues, we didn’t choose this. But, we were chosen because we can handle it. Fight for yourself just like Patsy said. My doctors have learned that when I tell you something is wrong, I am not just blowing smoke.

  24. Lynn Johnson-Lynch

    My husband has had his ostomy since June 2016. The first 3 months went fine. Then he started getting a rash/ blisters under the wafer. So tried everything- different wafers, paste, skin barriers, barrier rings. Went to wound care said it was a yeast. So started with althetes medicated foot powder and skin barrier, had to layer 3 times. Put wafer on and then put the strips on the sides. He’s still blowing out, wafers won’t stick. Been with wound care for 2 months no change in skin condition. I’m beginning to think this is not a yeast infection. Suggestions anyone? Thanks.

    Reply
  25. Sally

    I have almost no leaks since I started using the Sure Seal rings from Active Lifestyle products. They are like a tape barrier but made of Tegaderm. I’ve had an ostomy for 20 years and this is the best product I have ever used in terms of saving my skin and avoiding leaks. When it does leak, the seals buy me time.

    When I had trouble with the wafer not sticking after a surgery, I used Perma-Type surgical cement. That stuff was amazing, but extremely sticky and difficult to apply and remove. But it kept that pouch on!

    Reply
  26. Dawn

    “Stewie” my stoma leaks as well…it starts itching around the 3rd day of putting my bag on…and if I itch too much the stool starts oozing out through the adhesive.

    Reply
    1. Sharon Corl

      Sounds like you need to change it more often because it is breaking down. More often than not, I have to change mine everyday. If I get lucky, it might last two days.

      Reply
      1. David Gardiner

        Most times , I chance my base-plate every second day , but sometimes every day if the weather is hot & humid , or if I’ve been doing strenuous work or sport. I change my bag daily. Hope it works out well for you eventually !

        Reply

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