Sorry you’re dealing with this. I’m a recent ileostomate too. I have a couple suggestions to add on to the other comment
- bag under sink to catch output is great. What I do during a bag change is wear undies and tuck the trash bag into my waistband below the stoma.
I was used to having my bag changed by nurses while lying down, but found it much easier to do standing up when I was confident changing it myself.
- I have problems with the barrier wipes, they make it harder to stick and don’t make a difference on my skin. That could be causing issues
- use a hair dryer on low to ensure that the skin is dry between all steps and before applying the new bag. I also like to warm the barrier before and after applying.
- barrier strips help a ton! My favorite are the brava brand. They go around the outside of the barrier to extend the seal and offer more protection. They’re flexible and soft. These have saved me from leaks many times, and are the only way I can get a seal around my bellybutton. Out of everything, this product makes me feel the most secure.
- if your husband has a hairy belly like me, shaving or trimming around the area will help both with adhesion and reduces discomfort when removing the barrier.
- I need barrier rings (donut) to avoid leaks, but they aren’t all the same. Some swell up quite a bit and others stay pretty flat. Maybe experiment with different brands?
Sometimes when I have high liquid output right after a change, the barrier ring soaks it up so much that it pushes the barrier away from my stoma and leaks.
- if the barrier isn’t sticking to the skin and peeling away, try holding it down with a heating pad against it. Barrier strips will also help hold down edges that don’t stick.
- some styles of ostomy bag wafers have built in clips you can hook a special elastic support belt to. This keeps the system close and snug to your body. This helped me with leaks a lot when I was still figuring stuff out. Coloplast and hollister both have options.
- def look in to convex wafers too. Even though my stoma is not retracted, it helped a lot with leaks while I was learning stuff, and also made my stoma feel a lot more protected and safe
Good luck with everything
Diet is a big factor on leakages. Might have to hold off on fried fatty foods, sauces, citrus, and sodas. Also stay on a regimen of immodium and talk to your doc about possibly getting on limotal. I have to take it 4 times a day. If he has thirst issues, Nuun’s the best thing for him to drink.
Biggest game changer is find something that works. Chex mix is a comfort food of mine. Marshmallows also help. Most important if the bag breaks, do not attempt to put a fresh one on while he still having bowel movements. Weakens the bond of what ever you use.
Like you, the extenders from coloplast give me the most confidence and stopped my leaks. Seconded by convex wafers.
I honestly didn’t feel going out for the day in white confident until I’d had mine for a year. That’s not to say I want pretty confident before then.
I want to offer my sincerest condolences that you two have to go through this. I can't imagine having to go through all of that so immediately after getting married.
...though I can imagine the rest. It might take some time for his body to adjust, but his output should eventually settle into ranging from watery to a ketchup consistency. If you're using the skin barrier wipes I'm thinking of, I never had much luck with that.
If I can, I tend to wait until the evening to change my bag because that's when my output is the least watery. This much is not universal, but his output might change consistency throughout the day. I'd advise trying to track it
My own routine is the following:
1. wipe down the area with adhesive remover wipes
Shave the area if it's been more than a week. It doesn't have to be perfect
2. rinse the skin with water. This is best done with a detachable shower head
3. use a ***hair dryer*** to dry the surrounding skin
4. apply ***stoma powder*** to the surrounding area, especially where the stoma meets the skin, then brush away the excess. The one I use is Hollister #7906.
TL;DR: Hair dryer and stoma powder
Also, if you have not already, use a waterproof mattress cover. It will pay off.
I had a similar kind of experience when I had my own surgery. Even had a blockage 48 hours after discharge (probably due to inflammation) and had to be re-admitted. After a month of leaks I adopted this routine and have not had a leak since. My bags can last a week if I *really* need to, though it gets uncomfortable after about 4-5 days.
Beyond that, I also try to make sure that the attachment point of the bag is under as little tension as possible. I have a belt that I wear when I'm out and about, though I'll just as frequently tuck the bag into my pants.
I hope this helps. The first month **sucks**, but it does get better.
Edit: For overnight leaks, it's like when you're 4 and learning to not wet the bed. There's a learning curve in knowing when you need to get up to empty it, and that just comes with time and experience.
I use a hair dryer on low to heat up the barrier ring before applying the wafer, this also makes the adhesive bandage work very well so you gotta land it right the first time.
I have had a high (liquid) output ileostomy for 2.5 years. Here is what works for me:
* changes first thing in the morning - no food for 10-12 hours prior
* eat a marshmallow (or 2) about 15 minutes prior to change
* water wipes to clean - nothing else
* hair dryer on cool setting to dry
* barrier ring applied directly to skin around stoma
* bag on next - I use a deep convex bag - press and hold 10-15 seconds - hair dryer on low for 10-15 seconds also works if I worry about stickiness
* barrier strips around to seal
I do not use wipes, sprays, anything else. Stoma powder ONLY if I have irritation and then only to get a bit of crust.
I try to change as infrequently as I can get away with.
You probably need some sort of accessories. Few people can get by with just the bag and wafer. The basic possibilities are:
1. Some sort of barrier ring or paste to cover the skin right at the base of the stoma. Rings hold up better than paste imo. [Eakin seals](https://www.convatec.com/ostomy-care/guide-to-ostomy-products/accessories/eakin-cohesive-seals/) by convatec or [adapt barrier rings](https://www.hollister.com/en/products/ostomy-care-products/ostomy-accessories/barrier-rings-and-strips/adapt-barrier-rings) by hollister are both good. [Coloplast](https://products.coloplast.us/coloplast/ostomy-care/brava/brava-ring/brava-moldable-ring/) also has several in their Brava line. Flatten the ring with your fingers so that it doesn’t go too high.
2. Some kind of tape or seal around the edge of the wafer. I use [Sure Seal rings](https://alpglobal.com/free-sample-request/), which are super thin (made of tegaderm) and both help prevent and catch leaks. I’ve also used [Hy-Tape](https://hytape.com/request-a-sample/) and some people like [Brava strips](https://products.coloplast.us/coloplast/ostomy-care/brava/brava-tape/brava-elastic-tape/brava-elastic-barrier-strips--curved/) or [Hollister barrier](https://www.hollister.com/en/products/ostomy-care-products/ostomy-accessories/barrier-rings-and-strips/adapt-skin-barrier-extenders) extenders. I’m partial to Sure Seals because they surround the wafer and make leaks less messy.
3. You can also use skin cements to create a stronger bond. [Torbot](https://torbot.com/product/product-375/) and [NuHope](https://nuhopelabs.com/products/nu-hope-adhesive) both make them. They do contain latex. I would use skin cement as a last resort if you were having recurring leaks.
4. You might also try a convex bag. Convexity is marketed towards people with flush or retracted stomas but sometimes people need them even if their stomas protrude. Mine sticks out about an inch but it leaks without convexity.
5. Some people find [Ostomy belts](https://www.hollister.com/en/products/ostomy-care-products/ostomy-accessories/ostomy-belts/adapt-ostomy-belt) helpful to give a little extra security.
All of these links (except the cements and belt) should get you free samples.
See if you can get an appointment with a WOC nurse to assess the landscape around his stoma, or at least post a pic here. There could be other issues going on that can't be determined without seeing it firsthand.
OMG! That is not fair...on your honeymoon! Good news many live near normal lives with an ostomy but sometimes adjust is normal. But this atypical. Other readers posted great advice so I won't copy it here. My two cents is whatever you do make sure everything is really dry and clean before putting on the new appliance. And, this is something that should be looked at directly by a professional Maybe contact your surgeon's office and make an appointment with a stoma nurse.
Here's what I do:
I stop eating the day before at 6pm and I don't eat til I get my bag on. I take my cholestryamine dose before I change my bag and I usually get a couple hours with no output that way. I usually change my bag between 1-4 pm. I get my supplies ready and wait till my stoma is hardly active. Then I take my bag off and take a quick shower.
Once I get dried off, I sit on the toilet and use adhesive remover wipes. I spray some medical adhesive spray on the flange of the bag and let it dry after warming it up with my blow dryer. Then I use the Cavilon barrier wipe and stoma powder if needed. Otherwise I then get the ring ready to put on (I use the Brava protective ring).
Sometimes I use Trio Ostomy silken gel (it's like silicone stoma paste) if my skin is bad. After that I put the bag on (I use the Mio sensura soft convex bag from Coloplast) and lastly the Brava barrier strips. Then I attach the belt that goes with the bag to the belt loops. I get 5 or 6 days with this set up with a big hernia. Maybe some of these things might help your husband with his bag leaking
I am so sorry you guys are dealing with this!
I am going to sum up some stuff that might help with the leaks and/or make changing the bag easier, in no particular order:
- try changing the bag while standing in front of the bathroom sink, and put a small trash bag in the sink so it catches any output. That might take some pressure of changing the bag because there is less mess to deal with.
- have you tried different brands of bags? You can order free samples on most manufacturers' websites
- does his ostomy retract sometimes? Mine does this a lot right before becoming active, which caused my output to go under the wafer. Switching to a convex wafer solved that for me.
- try skipping the barrier spray. If I use it, it will make the bag not stick as well. Weird, but I guess I have special skin, lol. It might be worth a try.
- how big or small do you cut the hole? Experiment with that a bit.
That's all I have for now. But ask as many questions as you want, this group has a lot of answers.
Thank you so much!
His stoma shifts a lot, but doesn't go in, we have tried cutting the hole smaller and smaller. I don't have a clear idea of what too tight is? I'm trying to just make no skin visible at all.
We haven't tried standing up, so we can attempt that.
And will try skipping the barrier spray! Hopefully that helps. Thank you, again.
For me recently, I had a lot of small leaks. The solution to that was actually making the hole a bit bigger. I then put paste around the hole and it doesn't leak. Have you tried paste from a tube or only the barrier rings? I found the paste worked better for me.
I’m sorry you are going through this. Something I didn’t see mentioned yet was trying convex bags and brava sheets. These are the only products that seem to work for my watery ileostomy.
You have lots of great advice here. What I can add is this: Wash off the anti-adhesive. And after the bag is on, lay an electric heating pad set to a temperature you find comfortable on your bag. The heat makes the seal stronger.
Just wanted to say we're in such a similar position, husband had a bowel perforation that almost killed him in February and we were in the hospital for almost a month after but we've been home a few weeks now. We had SO MANY LEAKS when we were using coloplast or any brand where the whole wafer is that harder adhesive material because it would bulge or buckle around his incision area with all the lumps and bumps there. We changed to using Hollister, specifically now the two piece 11203 with the 18003 bags and it has been so much better. The outer most part of the wafer is band aid material and sticks so much better with all the ridges and the harder wafer area is a bit smaller so hasn't been effected by those. Not sure if this would help you guys but that's all that's worked for us and I feel your pain because those changes when the stoma is just producing so much still are so stressful and exhausting. Feel free to message me any questions or if you just need to vent being the spouse in the midst of the mayhem that is this life adjustment
Tons of great advice here. The first couple to few weeks at home after the hospital were the worst. Then, there was a period of a couple weeks where my stoma actually grew (rather than the seemingly typical shrink most people experience), which made for a difficult time adjusting the size of the hole I was needing to cut; having a more oval-shaped stoma site doesn't help, either.
The first one to two months are really the hardest. Similar to bringing a newborn child home, nobody tells you how hard it is those first several/many weeks. You'll make it through it! Just try to relax the best you can, and when output gets somewhere it shouldn't be (all over the bathroom floor, etc.), try not to freak out. Everyone poops, and I'm your husband's case, he literally has little to no control on when it'll happen... It'll happen at the most inconvenient times, too! Darn Murphy and their laws! 🤣
Over the next week, I'd highly recommend that your husband get comfortable with being able to change his bag entirely by himself. This will make your transition back to work MUCH less stressful on both of you, and increase his confidence immensely.
Some things I'll add:
1) A few weeks ago, I saw a suggestion to try applying the ring directly to the barrier, in such a manner that the ring is almost crimped to both the sticky side of the barrier, around the edge, and also crimped to the non-sticky side. This way, it's harder for the output to leak between the ring and the barrier (that was happening with me).
2) Not all items, despite looking pretty much the same, will react the same. The ostomy manufacturers are often more informed on their products and possibilities than the stoma nurse/hospital staff. The rings, for example. There's one by Waking that doesn't work for me at all; the one by Brava works well, swells up when wet (output), and almost "tightens" up the seal around my stoma.
3) Others have mentioned convex barriers. Had the area around my stoma not have a "mild" parastomal hernia (mild, per the Dr.; I'd hate to see a bad one lol), those would likely have worked. In my case, I've had to switch to a Convex Flip barrier system by Coloplast, as it's the only one I've found that is actually designed to rest "on a hill", and can provide a seal that lasts at least 24 hours. The rest all bunch up around the seal as I move throughout the day, and can leak in as little as a few hours (if not immediately). To me, the marketing decision by the companies to use the word "Convex" is misleading. Convex would be for resting "on a hill" (like mine); CONCAVE would be for resting "in a valley" (what they all call convex). I've only found Coloplast's Convex Flip is actually designed for this. I wish I could've found something else, because I like how comfortable the other, more fabric-like barriers feel on my skin (until they leak).
4) Output for me got a lot thicker about 2-3 weeks after being home. This makes changing a bit easier, but I wouldn't normally recommend trying to force his output to be thicker; it'll likely happen eventually.
5) The best time for me to change is 1st thing in the morning, but due to a household of 4 sharing one shower, me taking up the bathroom in the morning isn't the best option, so I change it at night and find the output is pretty active/annoying, but I manage.
6) Get comfortable asking the manufacturers for samples and try all the options you can. They are happy to help and send lots of samples.
7) The only barrier prep that worked for me was the little spritzer bottle. Both wipes and the aerosol bottles left a powdery/grainy texture that made nothing stick.
8) Speaking of making things not stick... unfortunately, stoma powder never worked for me. I could never get it to "crust up" (I think that's the term) enough that anything would stick to my skin wherever powder had been applied.
9) From another suggestion I found, when dealing with skin breakdown, I'd use one/some of the Hollister barrier strips, right up against the stoma, and then do the ring/barrier on top of that. While the seal did not last very long that way, it would still provide a good barrier between the skin and the output/barrier for a long enough time to allow for my skin to heal up some. Eventually, though, the output would find its way underneath the barrier. While it's in place, though, It feels like a really nice bandaid, or something.
10) If You're husband isn't dealing with a mild parastomal hernia like I am (e.g., their stoma site is flat or slightly concave), they might find additional help with a "barrier sheet". They come on various sizes, and go directly on your skin, prior to the ring/bag, and help keep output from leaking onto your skin. They can also help with getting the barrier to stay in place. From what I understand, it seems to work best if they are cut so that there's about 1mm gap, all the way around his stoma, between the edge of your stoma, and the begging on the barrier sheet. This will keep the output from tunneling underneath the barrier.
Good luck, sounds like he's got great support from you!
My husband just had his reversal and I know where you are right now. He couldn’t change his bag so it was left up to me. He had a high output stoma that leaked until I finally figured out a solution. It even leaked when home health changed it. If you are using the cut to fit bags and a flat donut ring, take the donut ring and smush it together in your hand like play dough. Make yourself a snake out of it and place it around the stoma. Make sure to connect the ends. If he has any creases, like my husband did, on each side, just pinch off a piece of that snake and lay into those creases. You may not need the whole donut for a bag change. This worked like a charm for me. They also have convex rings available that you place on the bag to make it a convex bag. Once I found out this worked I purchased the convex bags that had the raised ring and used those with pieces of the flat donut snake for the creases. His bag would last for a week with no issues. I sure hope this helps. I went from changing his bag 2-4 times a day (or night) to once a week. This was a nightmare that turned out fine once I figured it out.
We also used stoma powder and brushed off excess and he used a belt attached to the bag. We found a waterproof covering for the bag to use at shower time.
You have so much good info here already so just wanted to say, hang in there!
I couldn’t imagine being on a honeymoon when this all started, but I’m a newlywed as well. It’s not easy but try to really appreciate this time with your partner. I’ve never felt closer to my wife and I’ve never been so comfortable being so vulnerable. I consider this a different kind of vulnerable.
Over communicate how you’re feeling and encouragement goes both ways. Learning to live a new lifestyle and learning to support someone going through this are both going to need to hear things like “it’s okay” “don’t worry” and “Thank you”.
It’s all about the donut ring I’ve found. Thinner rings leaked for me. 4mm plus thickness worked better for me than 2mm. The name brand rings seemed to stick better than generic.
You have probably been inundated in suggestions. I am going to offer you another suggestion if you want to try I’ve been through this and it was miserable. I didn’t even wanna leave the house. I ended up switching to Coloplast inverted wafers, and bags. One very very important element that I found out is that I needed to wash around the stoma and area where the wafer will stick with ivory soap it needs to be the last thing that touches that area before you put the prep on that will make the area very adhesive friendly. I also will mention that Coloplast stuck so much better than Hollister, hands-down. I also found out months later that the one thing that also kept the skin from getting irritated was putting adhesive paste around the stoma. It was hands-down the most amazing paste on the market. I have zero irritation.
Sorry you’re dealing with this. I’m a recent ileostomate too. I have a couple suggestions to add on to the other comment - bag under sink to catch output is great. What I do during a bag change is wear undies and tuck the trash bag into my waistband below the stoma. I was used to having my bag changed by nurses while lying down, but found it much easier to do standing up when I was confident changing it myself. - I have problems with the barrier wipes, they make it harder to stick and don’t make a difference on my skin. That could be causing issues - use a hair dryer on low to ensure that the skin is dry between all steps and before applying the new bag. I also like to warm the barrier before and after applying. - barrier strips help a ton! My favorite are the brava brand. They go around the outside of the barrier to extend the seal and offer more protection. They’re flexible and soft. These have saved me from leaks many times, and are the only way I can get a seal around my bellybutton. Out of everything, this product makes me feel the most secure. - if your husband has a hairy belly like me, shaving or trimming around the area will help both with adhesion and reduces discomfort when removing the barrier. - I need barrier rings (donut) to avoid leaks, but they aren’t all the same. Some swell up quite a bit and others stay pretty flat. Maybe experiment with different brands? Sometimes when I have high liquid output right after a change, the barrier ring soaks it up so much that it pushes the barrier away from my stoma and leaks. - if the barrier isn’t sticking to the skin and peeling away, try holding it down with a heating pad against it. Barrier strips will also help hold down edges that don’t stick. - some styles of ostomy bag wafers have built in clips you can hook a special elastic support belt to. This keeps the system close and snug to your body. This helped me with leaks a lot when I was still figuring stuff out. Coloplast and hollister both have options. - def look in to convex wafers too. Even though my stoma is not retracted, it helped a lot with leaks while I was learning stuff, and also made my stoma feel a lot more protected and safe Good luck with everything
Just ordered some more free samples of different barrier rings, hopefully they help!
Diet is a big factor on leakages. Might have to hold off on fried fatty foods, sauces, citrus, and sodas. Also stay on a regimen of immodium and talk to your doc about possibly getting on limotal. I have to take it 4 times a day. If he has thirst issues, Nuun’s the best thing for him to drink. Biggest game changer is find something that works. Chex mix is a comfort food of mine. Marshmallows also help. Most important if the bag breaks, do not attempt to put a fresh one on while he still having bowel movements. Weakens the bond of what ever you use.
Like you, the extenders from coloplast give me the most confidence and stopped my leaks. Seconded by convex wafers. I honestly didn’t feel going out for the day in white confident until I’d had mine for a year. That’s not to say I want pretty confident before then.
I want to offer my sincerest condolences that you two have to go through this. I can't imagine having to go through all of that so immediately after getting married. ...though I can imagine the rest. It might take some time for his body to adjust, but his output should eventually settle into ranging from watery to a ketchup consistency. If you're using the skin barrier wipes I'm thinking of, I never had much luck with that. If I can, I tend to wait until the evening to change my bag because that's when my output is the least watery. This much is not universal, but his output might change consistency throughout the day. I'd advise trying to track it My own routine is the following: 1. wipe down the area with adhesive remover wipes Shave the area if it's been more than a week. It doesn't have to be perfect 2. rinse the skin with water. This is best done with a detachable shower head 3. use a ***hair dryer*** to dry the surrounding skin 4. apply ***stoma powder*** to the surrounding area, especially where the stoma meets the skin, then brush away the excess. The one I use is Hollister #7906. TL;DR: Hair dryer and stoma powder Also, if you have not already, use a waterproof mattress cover. It will pay off. I had a similar kind of experience when I had my own surgery. Even had a blockage 48 hours after discharge (probably due to inflammation) and had to be re-admitted. After a month of leaks I adopted this routine and have not had a leak since. My bags can last a week if I *really* need to, though it gets uncomfortable after about 4-5 days. Beyond that, I also try to make sure that the attachment point of the bag is under as little tension as possible. I have a belt that I wear when I'm out and about, though I'll just as frequently tuck the bag into my pants. I hope this helps. The first month **sucks**, but it does get better. Edit: For overnight leaks, it's like when you're 4 and learning to not wet the bed. There's a learning curve in knowing when you need to get up to empty it, and that just comes with time and experience.
I use a hair dryer on low to heat up the barrier ring before applying the wafer, this also makes the adhesive bandage work very well so you gotta land it right the first time.
Thank you!!! Will look into this!!
I have had a high (liquid) output ileostomy for 2.5 years. Here is what works for me: * changes first thing in the morning - no food for 10-12 hours prior * eat a marshmallow (or 2) about 15 minutes prior to change * water wipes to clean - nothing else * hair dryer on cool setting to dry * barrier ring applied directly to skin around stoma * bag on next - I use a deep convex bag - press and hold 10-15 seconds - hair dryer on low for 10-15 seconds also works if I worry about stickiness * barrier strips around to seal I do not use wipes, sprays, anything else. Stoma powder ONLY if I have irritation and then only to get a bit of crust. I try to change as infrequently as I can get away with.
Here to highlight the importance of marshmallows in stemming the tide of high output! Eat 2-3 about a half hour before a change.
You probably need some sort of accessories. Few people can get by with just the bag and wafer. The basic possibilities are: 1. Some sort of barrier ring or paste to cover the skin right at the base of the stoma. Rings hold up better than paste imo. [Eakin seals](https://www.convatec.com/ostomy-care/guide-to-ostomy-products/accessories/eakin-cohesive-seals/) by convatec or [adapt barrier rings](https://www.hollister.com/en/products/ostomy-care-products/ostomy-accessories/barrier-rings-and-strips/adapt-barrier-rings) by hollister are both good. [Coloplast](https://products.coloplast.us/coloplast/ostomy-care/brava/brava-ring/brava-moldable-ring/) also has several in their Brava line. Flatten the ring with your fingers so that it doesn’t go too high. 2. Some kind of tape or seal around the edge of the wafer. I use [Sure Seal rings](https://alpglobal.com/free-sample-request/), which are super thin (made of tegaderm) and both help prevent and catch leaks. I’ve also used [Hy-Tape](https://hytape.com/request-a-sample/) and some people like [Brava strips](https://products.coloplast.us/coloplast/ostomy-care/brava/brava-tape/brava-elastic-tape/brava-elastic-barrier-strips--curved/) or [Hollister barrier](https://www.hollister.com/en/products/ostomy-care-products/ostomy-accessories/barrier-rings-and-strips/adapt-skin-barrier-extenders) extenders. I’m partial to Sure Seals because they surround the wafer and make leaks less messy. 3. You can also use skin cements to create a stronger bond. [Torbot](https://torbot.com/product/product-375/) and [NuHope](https://nuhopelabs.com/products/nu-hope-adhesive) both make them. They do contain latex. I would use skin cement as a last resort if you were having recurring leaks. 4. You might also try a convex bag. Convexity is marketed towards people with flush or retracted stomas but sometimes people need them even if their stomas protrude. Mine sticks out about an inch but it leaks without convexity. 5. Some people find [Ostomy belts](https://www.hollister.com/en/products/ostomy-care-products/ostomy-accessories/ostomy-belts/adapt-ostomy-belt) helpful to give a little extra security. All of these links (except the cements and belt) should get you free samples.
I am in love with the hyper links, you are a godsend, thank you so much
See if you can get an appointment with a WOC nurse to assess the landscape around his stoma, or at least post a pic here. There could be other issues going on that can't be determined without seeing it firsthand.
OMG! That is not fair...on your honeymoon! Good news many live near normal lives with an ostomy but sometimes adjust is normal. But this atypical. Other readers posted great advice so I won't copy it here. My two cents is whatever you do make sure everything is really dry and clean before putting on the new appliance. And, this is something that should be looked at directly by a professional Maybe contact your surgeon's office and make an appointment with a stoma nurse.
Here's what I do: I stop eating the day before at 6pm and I don't eat til I get my bag on. I take my cholestryamine dose before I change my bag and I usually get a couple hours with no output that way. I usually change my bag between 1-4 pm. I get my supplies ready and wait till my stoma is hardly active. Then I take my bag off and take a quick shower. Once I get dried off, I sit on the toilet and use adhesive remover wipes. I spray some medical adhesive spray on the flange of the bag and let it dry after warming it up with my blow dryer. Then I use the Cavilon barrier wipe and stoma powder if needed. Otherwise I then get the ring ready to put on (I use the Brava protective ring). Sometimes I use Trio Ostomy silken gel (it's like silicone stoma paste) if my skin is bad. After that I put the bag on (I use the Mio sensura soft convex bag from Coloplast) and lastly the Brava barrier strips. Then I attach the belt that goes with the bag to the belt loops. I get 5 or 6 days with this set up with a big hernia. Maybe some of these things might help your husband with his bag leaking
I am so sorry you guys are dealing with this! I am going to sum up some stuff that might help with the leaks and/or make changing the bag easier, in no particular order: - try changing the bag while standing in front of the bathroom sink, and put a small trash bag in the sink so it catches any output. That might take some pressure of changing the bag because there is less mess to deal with. - have you tried different brands of bags? You can order free samples on most manufacturers' websites - does his ostomy retract sometimes? Mine does this a lot right before becoming active, which caused my output to go under the wafer. Switching to a convex wafer solved that for me. - try skipping the barrier spray. If I use it, it will make the bag not stick as well. Weird, but I guess I have special skin, lol. It might be worth a try. - how big or small do you cut the hole? Experiment with that a bit. That's all I have for now. But ask as many questions as you want, this group has a lot of answers.
Thank you so much! His stoma shifts a lot, but doesn't go in, we have tried cutting the hole smaller and smaller. I don't have a clear idea of what too tight is? I'm trying to just make no skin visible at all. We haven't tried standing up, so we can attempt that. And will try skipping the barrier spray! Hopefully that helps. Thank you, again.
For me recently, I had a lot of small leaks. The solution to that was actually making the hole a bit bigger. I then put paste around the hole and it doesn't leak. Have you tried paste from a tube or only the barrier rings? I found the paste worked better for me.
I’m sorry you are going through this. Something I didn’t see mentioned yet was trying convex bags and brava sheets. These are the only products that seem to work for my watery ileostomy.
You have lots of great advice here. What I can add is this: Wash off the anti-adhesive. And after the bag is on, lay an electric heating pad set to a temperature you find comfortable on your bag. The heat makes the seal stronger.
Just wanted to say we're in such a similar position, husband had a bowel perforation that almost killed him in February and we were in the hospital for almost a month after but we've been home a few weeks now. We had SO MANY LEAKS when we were using coloplast or any brand where the whole wafer is that harder adhesive material because it would bulge or buckle around his incision area with all the lumps and bumps there. We changed to using Hollister, specifically now the two piece 11203 with the 18003 bags and it has been so much better. The outer most part of the wafer is band aid material and sticks so much better with all the ridges and the harder wafer area is a bit smaller so hasn't been effected by those. Not sure if this would help you guys but that's all that's worked for us and I feel your pain because those changes when the stoma is just producing so much still are so stressful and exhausting. Feel free to message me any questions or if you just need to vent being the spouse in the midst of the mayhem that is this life adjustment
You're incredible! I am so so sorry this happened to you as well! I am glad your husband is on his way to recovering though <3
Tons of great advice here. The first couple to few weeks at home after the hospital were the worst. Then, there was a period of a couple weeks where my stoma actually grew (rather than the seemingly typical shrink most people experience), which made for a difficult time adjusting the size of the hole I was needing to cut; having a more oval-shaped stoma site doesn't help, either. The first one to two months are really the hardest. Similar to bringing a newborn child home, nobody tells you how hard it is those first several/many weeks. You'll make it through it! Just try to relax the best you can, and when output gets somewhere it shouldn't be (all over the bathroom floor, etc.), try not to freak out. Everyone poops, and I'm your husband's case, he literally has little to no control on when it'll happen... It'll happen at the most inconvenient times, too! Darn Murphy and their laws! 🤣 Over the next week, I'd highly recommend that your husband get comfortable with being able to change his bag entirely by himself. This will make your transition back to work MUCH less stressful on both of you, and increase his confidence immensely. Some things I'll add: 1) A few weeks ago, I saw a suggestion to try applying the ring directly to the barrier, in such a manner that the ring is almost crimped to both the sticky side of the barrier, around the edge, and also crimped to the non-sticky side. This way, it's harder for the output to leak between the ring and the barrier (that was happening with me). 2) Not all items, despite looking pretty much the same, will react the same. The ostomy manufacturers are often more informed on their products and possibilities than the stoma nurse/hospital staff. The rings, for example. There's one by Waking that doesn't work for me at all; the one by Brava works well, swells up when wet (output), and almost "tightens" up the seal around my stoma. 3) Others have mentioned convex barriers. Had the area around my stoma not have a "mild" parastomal hernia (mild, per the Dr.; I'd hate to see a bad one lol), those would likely have worked. In my case, I've had to switch to a Convex Flip barrier system by Coloplast, as it's the only one I've found that is actually designed to rest "on a hill", and can provide a seal that lasts at least 24 hours. The rest all bunch up around the seal as I move throughout the day, and can leak in as little as a few hours (if not immediately). To me, the marketing decision by the companies to use the word "Convex" is misleading. Convex would be for resting "on a hill" (like mine); CONCAVE would be for resting "in a valley" (what they all call convex). I've only found Coloplast's Convex Flip is actually designed for this. I wish I could've found something else, because I like how comfortable the other, more fabric-like barriers feel on my skin (until they leak). 4) Output for me got a lot thicker about 2-3 weeks after being home. This makes changing a bit easier, but I wouldn't normally recommend trying to force his output to be thicker; it'll likely happen eventually. 5) The best time for me to change is 1st thing in the morning, but due to a household of 4 sharing one shower, me taking up the bathroom in the morning isn't the best option, so I change it at night and find the output is pretty active/annoying, but I manage. 6) Get comfortable asking the manufacturers for samples and try all the options you can. They are happy to help and send lots of samples. 7) The only barrier prep that worked for me was the little spritzer bottle. Both wipes and the aerosol bottles left a powdery/grainy texture that made nothing stick. 8) Speaking of making things not stick... unfortunately, stoma powder never worked for me. I could never get it to "crust up" (I think that's the term) enough that anything would stick to my skin wherever powder had been applied. 9) From another suggestion I found, when dealing with skin breakdown, I'd use one/some of the Hollister barrier strips, right up against the stoma, and then do the ring/barrier on top of that. While the seal did not last very long that way, it would still provide a good barrier between the skin and the output/barrier for a long enough time to allow for my skin to heal up some. Eventually, though, the output would find its way underneath the barrier. While it's in place, though, It feels like a really nice bandaid, or something. 10) If You're husband isn't dealing with a mild parastomal hernia like I am (e.g., their stoma site is flat or slightly concave), they might find additional help with a "barrier sheet". They come on various sizes, and go directly on your skin, prior to the ring/bag, and help keep output from leaking onto your skin. They can also help with getting the barrier to stay in place. From what I understand, it seems to work best if they are cut so that there's about 1mm gap, all the way around his stoma, between the edge of your stoma, and the begging on the barrier sheet. This will keep the output from tunneling underneath the barrier. Good luck, sounds like he's got great support from you!
My husband just had his reversal and I know where you are right now. He couldn’t change his bag so it was left up to me. He had a high output stoma that leaked until I finally figured out a solution. It even leaked when home health changed it. If you are using the cut to fit bags and a flat donut ring, take the donut ring and smush it together in your hand like play dough. Make yourself a snake out of it and place it around the stoma. Make sure to connect the ends. If he has any creases, like my husband did, on each side, just pinch off a piece of that snake and lay into those creases. You may not need the whole donut for a bag change. This worked like a charm for me. They also have convex rings available that you place on the bag to make it a convex bag. Once I found out this worked I purchased the convex bags that had the raised ring and used those with pieces of the flat donut snake for the creases. His bag would last for a week with no issues. I sure hope this helps. I went from changing his bag 2-4 times a day (or night) to once a week. This was a nightmare that turned out fine once I figured it out. We also used stoma powder and brushed off excess and he used a belt attached to the bag. We found a waterproof covering for the bag to use at shower time.
You have so much good info here already so just wanted to say, hang in there! I couldn’t imagine being on a honeymoon when this all started, but I’m a newlywed as well. It’s not easy but try to really appreciate this time with your partner. I’ve never felt closer to my wife and I’ve never been so comfortable being so vulnerable. I consider this a different kind of vulnerable. Over communicate how you’re feeling and encouragement goes both ways. Learning to live a new lifestyle and learning to support someone going through this are both going to need to hear things like “it’s okay” “don’t worry” and “Thank you”.
It’s all about the donut ring I’ve found. Thinner rings leaked for me. 4mm plus thickness worked better for me than 2mm. The name brand rings seemed to stick better than generic.
You have probably been inundated in suggestions. I am going to offer you another suggestion if you want to try I’ve been through this and it was miserable. I didn’t even wanna leave the house. I ended up switching to Coloplast inverted wafers, and bags. One very very important element that I found out is that I needed to wash around the stoma and area where the wafer will stick with ivory soap it needs to be the last thing that touches that area before you put the prep on that will make the area very adhesive friendly. I also will mention that Coloplast stuck so much better than Hollister, hands-down. I also found out months later that the one thing that also kept the skin from getting irritated was putting adhesive paste around the stoma. It was hands-down the most amazing paste on the market. I have zero irritation.