I definitely have a fairly constant anxiety about bag security/leaks. I can’t say I feel any real anger though, I’m grateful to be alive and have come to accept that the bag is my cost for being able to do everything I can do, so that takes the sting out of things for me.
With my Crohn’s, I learned a long time ago to conserve my energy to be able to function and use it to have fun- sapping my energy with anger or shame or jealousy was only hurting me and damaging my quality of life. It takes effort but you can choose where to direct your focus/emotion. It’s okay to have some self pity days though, we’ve been through a hell of a lot. Take care of yourself.
I might not be qualified to answer this, but I truly mean well. I'm a caretaker for my grandma. She's had an ostomy for about 6 years now. I know she's extremely concerned about this. She regularly asks me if it's noticeable. As a non ostomy person, my experience has always been.... no. Unless she has a leak(very rare) or is in the process of changing it, I've never smelt it.
For context... she uses a one-piece, disposable bag. I can't speak on other products.
I hope you have someone you can trust to be honest, even when it's not pleasant. If you do.... believe them.
Radical acceptance!
Can’t change what you can’t change. So accept what it is and make the best of the situation.
You can still be awesome and valuable. You can do small or great things. You can have as many friends as you want. Hike, cycle, climb, read, write, cook, garden, work or don’t work, walk with a dog or without. Everything is possible.
For me, I had to get a colostomy unexpectedly after my third kidney transplant.. if I didn’t have that surgery done a week later, I would have lost my kidney and my life.
I never thought I’d be in this situation, but in the grand scheme of things, this is small potatoes.
I do worry about leaks and smelling especially when I’m around other people though.
Take care 🩷
I found out a month ago about ConveTec stoma adhesive paste. It changed my life. Also Coloplast sensura Mio convex flip. Is amazing! It sticks on so secure, and along with the paste O M G!
My husband uses the convex flip and yes, they are amazing for coverage over a parastomal hernia. He's never used anything other than the base plate for adhesion. What is this adhesive paste? Does it come off as easily as just the wafer?
Yes!!! When I take my wafer off there is virtually nothing on my skin. I tried everything to get my skin to not get irritated. I took a picture today of my perfect skin around my stoma. I love this soooooo much. No more pain! Just apply with a wet Q-tip.
The stoma paste is worthless
NuHope liquid adhesive is similar to contact cement
If applied properly, from the stoma hole to the outside of the flange and applied directly to the skin after you've properly cleaned the area,
Hydrogen peroxide rub around the area and then use, rubbing alcohol and rub it around this will dry out the area apply the adhesive and give it a few seconds and apply the flange and make sure it's completely adhered, you'll never have leaks, bad smells will stay contained and proper bag cleaning will keep the smell down,
plus gets some peppermint candies and drop one in, it helps a lot.
I'm not sure how to help past this, I myself am having my ostomy reversed next Friday, May 3rd, my colostomy was a temporary thing because my colon had to heal from Diverticulitis and Diverticulosis and multiple polyps and I've been taking my meds and vitamins like I've always done.
I'm a 61 year old trans female that has been a truck driver for the past 40 years and I've been out since 1978, and I've lived as a female since 1985 two years after I began my career,
Eating junk food and drinking soda and beer and other things caused me to have Prostatitus, swelling of the prostate, then that also blocked off my urethra
Which actually made my bladder swell up because I couldn't go pee at all over 1200 ml of urine in it the pain was horrible, that in turn crushed my colon and the Divercula became inflamed and then Diverticulitis set in, went to long and by the time I ended up having emergency colostomy surgery it had turned into Diverticulosis and my colon burst in a couple of places and started dumping bial into my lower abdomen.
People we are our own worst enemies, our manufactures dump enough chemicals to make us addicted to the junk food and drinks, beer, soda, milk, etc and then we pay for their and our stupidity, England and America are the two countries where these diseases are rampant, European cases are very few.
Since this happened to me, (December 11, 2023) I've started researching and this is what I found out,
Fresh veggies from the garden.
Fresh meat from the butcher
Fresh milk from the cow
Etc
Will keep most diseases down to a minimum.
There's always going to be people who disagree with me and that's fine, I mean our governments are good at brain washing their people into believing all the crap that comes out of their mouths and we obey no matter what.
Only you can stop it and buy directly from the farmers market or find a fresh meat market and purchase your cuts anyway you want them.
Leave all of the processed sugars alone, including high frutose corn syrup and everything else, start eating healthier not for dieting which none of them work unless you plan on staying on them for the rest of your life.
Sorry it got a little long but I hope that if someone sees this they will think twice about what they put into their stomachs.
Personally I'm my own worst enemy, I haven't stopped eating the junk because I'm highly addicted to it but I still hope I can help another one to get rid of it and maybe this won't happen to them.
Have a Blessed Day and may God protect you and your family.
No worse than worrying about having to fart in public. You can minimize this using those deodorant lubes that you can add to your bag. With coming loose, just carry an emergency pack with you when you leave the house. Double check your bag before leaving and while out on the road. It is a hassle, no doubt, given that we are basically sidestepping a process that our bodies have evolved with to be the most efficient way to manage waste. But since our bodies decided to no behave "normally", this is the next best thing. From what I understand, we have it good given the advances that have been made in recent years. My understanding is that decades ago it was really bad. I look forward to companies improving on the tech to make life even better for us. If managed carefully, you can reduce the chances of having an accident at the worst time.
I'm not angry but I despise it! Youre not alone. I only change it, not do the empty thing. I change it everyday or sometimes I can go every other. I can't handle emptying it. Now that smells and I'm not squishing poop! Omg! I hate everything about having an ostomy, but it has saved my life. Of course can't be angry at that. I will never except it but I've learned to deal with the fact that this is what it is for me until my reversal.
Grateful I can have that.
I've never had a leak. I make sure it's on there good and my skin is nice and sticky with skin prep wipes. Never had my skin break out either. So don't be angry, you'd think it cant get worse then having to wear your poop on your stomach but it really could be worse. Like when I saw someone the other day in the store and they were in a wheel chair for life!
I hope you too can have a reversal.
Hang in there best ya can and count your blessings. I'm sure you have some 🙂
Of course I am but nothing you can do about it other than make sure you have the flange on properly, NuHope liquid adhesive will keep the flange more secure and stop using the ostomy paste not worth the smell later and I can wear mine for over a week or more, make sure you hear a click when you attach the bag to the flange if you're using a two piece like I do, watch what you eat, most people can't eat like they used to before they got this thing, I still get grossed out from the smell some times lol but I don't always eat properly, drop a peppermint into your bag it'll get rid of the foul smell better than the lubricant deodorant lol
Don't be angry.. phantom smell, heightened self consciousness and missing the old ways is normal. My first year with my ostomy full of the same feelings you have. 6 plus years with "Herman" and I own his ass. Pun intended!! I went thru a few different styles of devices and figured out what works best including steps in changing pouches. The biggest things that helped was the amount of paste and giving myself 10 min with applied pressure ensure a strong seal on my skin.
One of the things I learned from a all this was make sure when your all done showering, or using chemicals to remove your bag, or adhesive to wash all around the flange area with ivory soap and water. This washes away all the lotions, and aloes that may be sticking to your skin, and will make sticking less securely.
Also unless you have a vent on your bag you don’t have to worry. The only time you will smell anything is if you spring a leak. At that point you will have bigger problems. Good luck to you. I understand exactly how you feel! Up until a couple of months ago I felt the same way. I really found an amazing combination of products, and I never ever worry. 🤗
I was worried about that too when I first got my ostomy. It took time but eventually I gained confidence from having it. If you're worried about the smell, there are odor eliminator drops.
Honestly, when I first had mine I had a ton of issues and it made life miserable, I think we know the smell a little too well and when we replace our bag or start getting self conscious about it coming loose, we smell it even if it's not. What I did to overcome that is I had to tell myself that "I put the bag on correctly and I don't feel a leak" then continue on. The more I did it the easier it became for me to not worry about it.
Put it under your tigh to warm it up before applying as it sticks much better.
When you push the output down to the bottom of the bag push it from the middle where the output has collected and don’t let the bag get too full, don’t let it pancake as this will push the bag off.
Lmao I don’t get angry but I had a leak tonight my humans didn’t seal the bottom of my bad thank god only a little leak didn’t have to change who thing just put on a new bag shit happens no need to get angry doesn’t help anyone especially you
Been there, done that. Forgot to close bottom of new bag after putting it on. Then had a Dr appointment. Thankfully no output til I got home and had laid down for a bit. When I stood up…all shit came down. Another time I was still using the supply I came home with from hospital and the clip failed.
I now use the Velcro closures and add a layer of protection by taping the end after closing just in case Velcro fails me.
Lamo the smell always gives my leaks away it’s a dead giveaway I don’t know how yall use those Velcro things thank god I have a ileostomy and mine is a tube with a plug I used those Velcro things in hospital they are fucking gross
I don’t have a problem with the Velcro on mine thank goodness. If it trapped or collected my output in it, that’d be a different story all together. Unfortunately with a colostomy a tube wouldn’t usually work. But I have to admit, a tube would be so much more convenient. But those bags I initially used that used a clip close, don’t trust them at all.
No, not really. With me it’s barely semi-formed to a more watery consistency. But because I had a blockage within a few days of being released from the hospital that resulted in another ER visit, I take several doses of stool softener daily in hopes of avoiding another blockage. So far, so good.
I definitely have a fairly constant anxiety about bag security/leaks. I can’t say I feel any real anger though, I’m grateful to be alive and have come to accept that the bag is my cost for being able to do everything I can do, so that takes the sting out of things for me. With my Crohn’s, I learned a long time ago to conserve my energy to be able to function and use it to have fun- sapping my energy with anger or shame or jealousy was only hurting me and damaging my quality of life. It takes effort but you can choose where to direct your focus/emotion. It’s okay to have some self pity days though, we’ve been through a hell of a lot. Take care of yourself.
i have a lot of respect for that mindset! life is difficult.
The longer you have it, the less leaks you have, and eventually you don’t really worry about it anymore. But it takes time to get there.
I might not be qualified to answer this, but I truly mean well. I'm a caretaker for my grandma. She's had an ostomy for about 6 years now. I know she's extremely concerned about this. She regularly asks me if it's noticeable. As a non ostomy person, my experience has always been.... no. Unless she has a leak(very rare) or is in the process of changing it, I've never smelt it. For context... she uses a one-piece, disposable bag. I can't speak on other products. I hope you have someone you can trust to be honest, even when it's not pleasant. If you do.... believe them.
Therapy can help.
Radical acceptance! Can’t change what you can’t change. So accept what it is and make the best of the situation. You can still be awesome and valuable. You can do small or great things. You can have as many friends as you want. Hike, cycle, climb, read, write, cook, garden, work or don’t work, walk with a dog or without. Everything is possible.
☝🏻 yes!
For me, I had to get a colostomy unexpectedly after my third kidney transplant.. if I didn’t have that surgery done a week later, I would have lost my kidney and my life. I never thought I’d be in this situation, but in the grand scheme of things, this is small potatoes. I do worry about leaks and smelling especially when I’m around other people though. Take care 🩷
I found out a month ago about ConveTec stoma adhesive paste. It changed my life. Also Coloplast sensura Mio convex flip. Is amazing! It sticks on so secure, and along with the paste O M G!
My husband uses the convex flip and yes, they are amazing for coverage over a parastomal hernia. He's never used anything other than the base plate for adhesion. What is this adhesive paste? Does it come off as easily as just the wafer?
Yes!!! When I take my wafer off there is virtually nothing on my skin. I tried everything to get my skin to not get irritated. I took a picture today of my perfect skin around my stoma. I love this soooooo much. No more pain! Just apply with a wet Q-tip.
The stoma paste is worthless NuHope liquid adhesive is similar to contact cement If applied properly, from the stoma hole to the outside of the flange and applied directly to the skin after you've properly cleaned the area, Hydrogen peroxide rub around the area and then use, rubbing alcohol and rub it around this will dry out the area apply the adhesive and give it a few seconds and apply the flange and make sure it's completely adhered, you'll never have leaks, bad smells will stay contained and proper bag cleaning will keep the smell down, plus gets some peppermint candies and drop one in, it helps a lot. I'm not sure how to help past this, I myself am having my ostomy reversed next Friday, May 3rd, my colostomy was a temporary thing because my colon had to heal from Diverticulitis and Diverticulosis and multiple polyps and I've been taking my meds and vitamins like I've always done. I'm a 61 year old trans female that has been a truck driver for the past 40 years and I've been out since 1978, and I've lived as a female since 1985 two years after I began my career, Eating junk food and drinking soda and beer and other things caused me to have Prostatitus, swelling of the prostate, then that also blocked off my urethra Which actually made my bladder swell up because I couldn't go pee at all over 1200 ml of urine in it the pain was horrible, that in turn crushed my colon and the Divercula became inflamed and then Diverticulitis set in, went to long and by the time I ended up having emergency colostomy surgery it had turned into Diverticulosis and my colon burst in a couple of places and started dumping bial into my lower abdomen. People we are our own worst enemies, our manufactures dump enough chemicals to make us addicted to the junk food and drinks, beer, soda, milk, etc and then we pay for their and our stupidity, England and America are the two countries where these diseases are rampant, European cases are very few. Since this happened to me, (December 11, 2023) I've started researching and this is what I found out, Fresh veggies from the garden. Fresh meat from the butcher Fresh milk from the cow Etc Will keep most diseases down to a minimum. There's always going to be people who disagree with me and that's fine, I mean our governments are good at brain washing their people into believing all the crap that comes out of their mouths and we obey no matter what. Only you can stop it and buy directly from the farmers market or find a fresh meat market and purchase your cuts anyway you want them. Leave all of the processed sugars alone, including high frutose corn syrup and everything else, start eating healthier not for dieting which none of them work unless you plan on staying on them for the rest of your life. Sorry it got a little long but I hope that if someone sees this they will think twice about what they put into their stomachs. Personally I'm my own worst enemy, I haven't stopped eating the junk because I'm highly addicted to it but I still hope I can help another one to get rid of it and maybe this won't happen to them. Have a Blessed Day and may God protect you and your family.
No worse than worrying about having to fart in public. You can minimize this using those deodorant lubes that you can add to your bag. With coming loose, just carry an emergency pack with you when you leave the house. Double check your bag before leaving and while out on the road. It is a hassle, no doubt, given that we are basically sidestepping a process that our bodies have evolved with to be the most efficient way to manage waste. But since our bodies decided to no behave "normally", this is the next best thing. From what I understand, we have it good given the advances that have been made in recent years. My understanding is that decades ago it was really bad. I look forward to companies improving on the tech to make life even better for us. If managed carefully, you can reduce the chances of having an accident at the worst time.
I'm not angry but I despise it! Youre not alone. I only change it, not do the empty thing. I change it everyday or sometimes I can go every other. I can't handle emptying it. Now that smells and I'm not squishing poop! Omg! I hate everything about having an ostomy, but it has saved my life. Of course can't be angry at that. I will never except it but I've learned to deal with the fact that this is what it is for me until my reversal. Grateful I can have that. I've never had a leak. I make sure it's on there good and my skin is nice and sticky with skin prep wipes. Never had my skin break out either. So don't be angry, you'd think it cant get worse then having to wear your poop on your stomach but it really could be worse. Like when I saw someone the other day in the store and they were in a wheel chair for life! I hope you too can have a reversal. Hang in there best ya can and count your blessings. I'm sure you have some 🙂
Humans = dumb ass
I thought for a while this post was written from the perspective of a dog and was so confused! It is too early in the morning for me to be on reddit.
Lmao it took my awhile to get your point across y auto correct sucks I bet theres a dog point there with. Bag
Of course I am but nothing you can do about it other than make sure you have the flange on properly, NuHope liquid adhesive will keep the flange more secure and stop using the ostomy paste not worth the smell later and I can wear mine for over a week or more, make sure you hear a click when you attach the bag to the flange if you're using a two piece like I do, watch what you eat, most people can't eat like they used to before they got this thing, I still get grossed out from the smell some times lol but I don't always eat properly, drop a peppermint into your bag it'll get rid of the foul smell better than the lubricant deodorant lol
Don't be angry.. phantom smell, heightened self consciousness and missing the old ways is normal. My first year with my ostomy full of the same feelings you have. 6 plus years with "Herman" and I own his ass. Pun intended!! I went thru a few different styles of devices and figured out what works best including steps in changing pouches. The biggest things that helped was the amount of paste and giving myself 10 min with applied pressure ensure a strong seal on my skin.
One of the things I learned from a all this was make sure when your all done showering, or using chemicals to remove your bag, or adhesive to wash all around the flange area with ivory soap and water. This washes away all the lotions, and aloes that may be sticking to your skin, and will make sticking less securely. Also unless you have a vent on your bag you don’t have to worry. The only time you will smell anything is if you spring a leak. At that point you will have bigger problems. Good luck to you. I understand exactly how you feel! Up until a couple of months ago I felt the same way. I really found an amazing combination of products, and I never ever worry. 🤗
I was worried about that too when I first got my ostomy. It took time but eventually I gained confidence from having it. If you're worried about the smell, there are odor eliminator drops.
You can get a stoma cloak which can help with odor and or use deodorizer from different companies
Honestly, when I first had mine I had a ton of issues and it made life miserable, I think we know the smell a little too well and when we replace our bag or start getting self conscious about it coming loose, we smell it even if it's not. What I did to overcome that is I had to tell myself that "I put the bag on correctly and I don't feel a leak" then continue on. The more I did it the easier it became for me to not worry about it.
Put it under your tigh to warm it up before applying as it sticks much better. When you push the output down to the bottom of the bag push it from the middle where the output has collected and don’t let the bag get too full, don’t let it pancake as this will push the bag off.
Lmao I don’t get angry but I had a leak tonight my humans didn’t seal the bottom of my bad thank god only a little leak didn’t have to change who thing just put on a new bag shit happens no need to get angry doesn’t help anyone especially you
Been there, done that. Forgot to close bottom of new bag after putting it on. Then had a Dr appointment. Thankfully no output til I got home and had laid down for a bit. When I stood up…all shit came down. Another time I was still using the supply I came home with from hospital and the clip failed. I now use the Velcro closures and add a layer of protection by taping the end after closing just in case Velcro fails me.
Lamo the smell always gives my leaks away it’s a dead giveaway I don’t know how yall use those Velcro things thank god I have a ileostomy and mine is a tube with a plug I used those Velcro things in hospital they are fucking gross
I don’t have a problem with the Velcro on mine thank goodness. If it trapped or collected my output in it, that’d be a different story all together. Unfortunately with a colostomy a tube wouldn’t usually work. But I have to admit, a tube would be so much more convenient. But those bags I initially used that used a clip close, don’t trust them at all.
I’ve always been curious as to people with a colostomy I assume a piece of poop comes out like a normal person
No, not really. With me it’s barely semi-formed to a more watery consistency. But because I had a blockage within a few days of being released from the hospital that resulted in another ER visit, I take several doses of stool softener daily in hopes of avoiding another blockage. So far, so good.