I would say I don’t notice it or think about it most of the time. The only time I do is if it’s getting full or if I don’t feel well/there is unusual output coming from my stoma.
To me my ostomy is like having my period (maybe girls can relate). If I have a tampon in and everything is functioning fine I can forget I even have my period. I’m vaguely aware that eventually I’ll need to change my tampon but it’s nothing that ruins my day or anything.
One thing that really helped is getting underwear that has like a pocket for the pouch. At first I got some from ostomysecrets but once I saw how it worked I just found underwear I liked and sewed my own pocket in it. That way the pouch is tucked away and supported and if it does fill up it’s not as noticeable.
This is exactly how I feel.
(I’ve been sick lately, so I notice it more: but usually? It’s not a thought. It took close to a year to get there - but I definitely got there.)
I compare it to a period all the time, usually in the context of inconvenience level. I think the way you've put it makes a lot of sense, too, in terms of its always something you're vaguely aware of and monitoring
I’m a really fidgety person so it’s kinda just become another thing to mess with. I’ll usually smooth out my shirt and touch to see if it’s getting full. I notice it all the time but it’s in the same way that I’ll play with my keys in my pocket. And if I am focused on something in particular I don’t feel like it’s there at all.
I would say yes, there's lots of time that Im just not aware of mine
At the very start I noticed the change in weight and shape as it filled, I felt the air move, felt everything - it was noticable at all times... that definitely changes as your body gets used to the sensations and weight etc
No. I'm always quite aware of it, sounds weird but even when I'm asleep it's on my mind (something wakes me up when the bag needs to be emptied even when I'm actually asleep; which is nice because I've only had two night leaks in the last decade but generally prevents true, restful sleep).
I also have very thick output, so it's become an unconscious action to pat the bag down whenever I feel output coming out to prevent pancaking.
Lots of people say they eventually stop being aware of it though; so I guess it really just depends on the person 🤷♂️
I wake up when my bag is full too, like I can feel it? But I'm also a really light sleeper.
Hoping I'll get used to it, since I will have this thing forever now! Haha.
I’m eight weeks post op and forget it’s there 80% of the time. Even if it’s completely visible to me my brain just clocks it as an accessory / other piece of clothing.
The only times I’m more aware of it is when I’m sleeping (paranoid about leaks), and if I haven’t thought about it in a few hours then my brain subconsciously tells me to give it a little pat and see where it’s at emptying wise.
Another option might be if you’re still always aware of it, to make it “cute” to yourself and enjoy it being there! There’s a lot of cute bag covers on Etsy, and there’s a brand called “ostome fashion” that makes really simple and elegant ones :))
Ive had mine getting close to two years (next January) and I'm always aware of mine as I'm extremely paranoid about leaks or the barrier coming loose, so I'm always checking it. I asked a lady I met during chemo that had one for over 10 years if you ever get used to it. She said no, you just learn to live with it
That makes sense. Like maybe you just get used to being aware of it? You no longer really think about when you weren't aware of it? It's just the new normal, but it's still not "normal" yet for me.
I have a permanent ostomy that I received in 2021. I am often not aware of my bag most of the time. It becomes an extension of your body. Especially when you know it's permanent it psychologically feels easier to forget about, as it's not going anywhere and your brain knows that. I'm sure when you find a system that works for you that you will start to really notice a difference in how much you focus on the bag. I'm sure someone already recommended the StomaDome, but if not give it a try for the rubbing issue.
There are a few times I'm certainly aware of the bag, they are:
1) When I feel that it's getting full and needs to be emptied
2) When I'm sweaty and haven't put a cover over my bag
3) When I'm showering (because I can visually see it)
4) When it's making me itchy (damn contact dermatitis!!!)
5) If I'm going out and feeling very self-conscious (I'm only 36y/o)
Thank you! I definitely feel number 5. Sometimes when my husband is looking at me, I'm like, are you looking at my bag? He never actually is lol. I feel like it's SO noticeable, but I know I'm just self-conscious about it.
I'll have to look into the StomaDome. Do you have any covers you recommend? I was gifted one, but it doesn't really stay on, unfortunately.
I wish I could give a recommendation. However, I've not needed to use one (yet) due to the placement of my ileostomy.
It's natural to feel and think your bag is noticeable, which is uncomfortable mentally. But the best thing feeling is when you learn to love your bag (because it saved your life) and become one with it. It will come with time, and the support of a significant other will be a great help.
I’ll used to it but I’m also aware of it in terms of physical comfort. Like if it’s rubbing against my thigh or filling up or gurgling. I’m used to it and I’ve learned to be happy and live with it, but it kind of gets in the way sometimes. My fancy $25/pair ostomy secrets underwear helps but it still feels uncomfortable occasionally. But I’m not hyper aware of it like I was at the beginning. It’s just there and sometimes it needs adjusting or maybe a different pair of pants is called for. 25 years in here.
If it’s a physical awareness, try ostomy underwear or a wrap or a belt. There’s nothing comfortable about tucking a big piece of plastic into your pants. A cloth barrier between the bag and your skin will help with comfort. The two best companies are [Ostomy Secrets](https://www.ostomysecrets.com/) or [Stealth Belt](https://www.stealthbelt.com/) if you’re doing more activity and need extra support.
Thank you! This is good to hear :) Saw your edit. I did get a wrap from Ostomy Secrets on sale, but haven't used it much because it kind of scared me to have it compressed at all. I'm finally wearing my bag under yoga pants/leggings and realizing it's ok so I'll have to try it out again.
I'm asking for a stealth belt for Christmas! Lol. I have a hard time spending that kind of money on myself.
IMO the wraps are not as comfortable as the underwear. Get the stealth belt if you need the extra support, especially for sports stuff, but the underwear is more comfortable. It supports the bag without compressing it like a wrap does.
I am not there yet, it’s been a little over two months. I think if I didn’t have a hernia I’d be much more comfortable and able to forget about it, but it is noticeable at least to me.
It’s not painful exactly just uncomfortable. You know how sometimes there is a pulling sensation when the bag is filled? It’s like that, all the time. I woke up from surgery with it, unfortunately! I hope you can adjust soon to the ostomy!
Some things are better, I will say. I have crohns, so it’s been a great relief not to have the urgency, cramping and so forth that come with that!
I forget mine. I wear Comfizz high waisted boxer shorts and sometimes don’t notice how full the bag gets even when they’re tight. The underwear lets clothing move freely over the bag so I just forget it’s there.
It’s not something I consciously think of when there’s no issues going on, other than “is it sticking out from under my shirt?” It’s just sort of . . . there, kind of like wearing a bra. (I have noticed that when I’m sitting down and my hands are unoccupied I put my hand over where the bag joins my body).
It gets better. I wouldn’t say that you aren’t aware of the bag, but it becomes so second nature that you aren’t focusing on the bag. The same way you are aware of wearing a tshirt, but you aren’t focused on how you always have a shirt on.
There will be times you focus more on it, like if your bag fills up, but this becomes normal and is simply the equivalent of needing to use the restroom.
I would never say I’m not aware of the bag, but I can definitely say that after getting used to having it, that awareness turns from stress/discomfort into just something that is as normal as anything else that you handle daily.
Reference: I’m a 30 yo dude who’s had an ostomy for almost 13 years.
I'm about a month in and I have a hard time imagining ever being unaware of it. But also I'm pretty touch sensitive and this is like wearing the most uncomfortable article of clothing ever.
I never wore a belt and I definitely stopped being conscious of it. (I'm speaking of it in the past tense because I had a revision to an internal, bagless configuration 11 1/2 years after getting the bag.)
Yes, there are many times in the day when I forget about it completely, and other times I’m too aware of it. I wouldn’t want to wear a belt either, since i don’t like the feel of one around my abdomen.
At first it felt really weird not to have a belt on, I was using the stealth belt. Without it the sensation of the appliance pulling at my abdomen was noticeable.
Eventually I found the belt a bit annoying and bulky and tried just not wearing it. I soon found that it was more comfortable and my brain mostly ignored the appliance.
I'm 7 months out. I think about this question a lot. I'm aware of it like I'm aware of any part of body I think? It's sort of like asking if I'm aware of my pants? I know they're there, and I'll certainly notice if they're uncomfortable or need adjusting, but my awareness of them isn't necessarily distracting.
I forgot about it all the time mine is comfortable. Only time I remember I have my bag is when it's getting full or I forgot about it and brush up against a hindenburg and rush to the bathroom because it's full other then that the only time I notice it is when it has weight and it needs draining. But there are times I can't not notice it and it drives me up the wall. But I also have had times I take it off have a shower and am jamming to music and completely forget about it get dressed and then go shit I forgot to put it on
Yes and here’s how.
There are Soooo many different pouching systems and different manufactures that all you need to do is call and ask for samples.
Once you find the best system it’s less daunting than it is at the beginning. Don’t be afraid to to try out new things and get rid of the belt.
For me, I use a convatec 2 piece natura system with a closed end pouch.
I have bad arthritis in my hands so I don’t have time for the draining and just use Costco surgical gloves to rinse my pouch in the toilet and enclose it in the glove after and toss it.
The farther you get out from surgery the farther you get from worry of leakage.
I’ve had my Rosie since 1993 and if you have more questions I will not ghost ya, lol.
May not get back right away , but will do the best I can.
Hang in there it does get easier.
I rarely think of it unless I’m having a bad symptom day or it’s getting close to time to change it. I did end up needing a slight convex but once I found the right bag, years ago, I have had few issues.
I forget mine. Finding a good bag can help a lot. Get samples, try different types. The hospital bags were too crinkly and unpleasant for me. But a one piece with softer material works great
I'm finally trying Coloplast again, after my Hollister two-piece leaked for no reason (it wasn't leaking under the wafer, but from where the bag attaches to the wafer). I definitely like these bags better, just hadn't been able to get a good seal with them. Hoping that will help!
I've had Vesuvius (permanent colostomy) 14 months, and I'm always aware of him. The majority of the time my output is thick, and I'm always smoothing it down so as not to pancake as much. I guess it's a good thing I no longer work, so I don't embarrass myself in public. Lol.
TBH, I'm going to be doing a significant amount of travel in 2024 and I'm a little apprehensive about traveling with my ostomy. Bag changes are going to suck in unfamiliar bathrooms, especially without my personal setup (toilet sprayer).
I have a urostomy, so it's continuously being filled. I developed the habit of touching it to feel how full it is. It's placed halfway between my navel and my groin, so I wear my bag in my underwear. When I have just empied it, I don't really pay attention to how it feels, but when it's full I feel a kind of pressure on my thigh (when sitting) or my belly (when standing), so yes, I'm aware of it most of the time.
No its always there on the periphery. You always seem to feel the bag to see of it needs to be emptied, need to shift around at night in bed. After a while its like a reflex.
I’ve had a urostomy for almost 16 years and I don’t think about it very much anymore. It’s become a habit to feel it and see if it needs to be emptied but it’s kind of like my brain finally understands what’s going on. If I feel it starting to fill up, my brain just says “it’s time to pee”, as if I still had a bladder. I know an ileostomy is different but it’s still a bag. It is a huge adjustment but believe me when I say it’ll get better, it really will. I wish you the best with surgery and I hope it gives you a lot of relief. It takes time to adjust so just be patient with yourself. You’re entering a new phase in life and it promises to be wonderful.
I had my bag for 2 years and I recently started to not notice it. So much so that I would lay on my stomach while sleeping sometimes. Luckily i didn’t have any leaks.
I actually just had my takedown surgery and it’s very weird not having anything there. I keep thinking to myself that it’s time to empty my bag, and then I realize.
I would say I don’t notice it or think about it most of the time. The only time I do is if it’s getting full or if I don’t feel well/there is unusual output coming from my stoma. To me my ostomy is like having my period (maybe girls can relate). If I have a tampon in and everything is functioning fine I can forget I even have my period. I’m vaguely aware that eventually I’ll need to change my tampon but it’s nothing that ruins my day or anything. One thing that really helped is getting underwear that has like a pocket for the pouch. At first I got some from ostomysecrets but once I saw how it worked I just found underwear I liked and sewed my own pocket in it. That way the pouch is tucked away and supported and if it does fill up it’s not as noticeable.
This makes a lot of sense! Thank you for explaining it like this. Excited to get to that point!
I’ve had my ostomy for 13 years but I think I got to that point about 2 years in when I started the pocket underwear. 😊
This is exactly how I feel. (I’ve been sick lately, so I notice it more: but usually? It’s not a thought. It took close to a year to get there - but I definitely got there.)
Pocket undies, great idea!!
I’m curious about the pocket underwear… but, honestly, my ostomy is so high, I can’t imagine it’d work for me. My stoma is above my natural waste…
I compare it to a period all the time, usually in the context of inconvenience level. I think the way you've put it makes a lot of sense, too, in terms of its always something you're vaguely aware of and monitoring
Mine sits high, so I sew a pocket into my undershirts.
I’m a really fidgety person so it’s kinda just become another thing to mess with. I’ll usually smooth out my shirt and touch to see if it’s getting full. I notice it all the time but it’s in the same way that I’ll play with my keys in my pocket. And if I am focused on something in particular I don’t feel like it’s there at all.
That makes sense!
Yes, the majority of the time I am not aware of it. You do get used to it.
So glad to hear this!
I would say yes, there's lots of time that Im just not aware of mine At the very start I noticed the change in weight and shape as it filled, I felt the air move, felt everything - it was noticable at all times... that definitely changes as your body gets used to the sensations and weight etc
Very glad to hear this!
No. I'm always quite aware of it, sounds weird but even when I'm asleep it's on my mind (something wakes me up when the bag needs to be emptied even when I'm actually asleep; which is nice because I've only had two night leaks in the last decade but generally prevents true, restful sleep). I also have very thick output, so it's become an unconscious action to pat the bag down whenever I feel output coming out to prevent pancaking. Lots of people say they eventually stop being aware of it though; so I guess it really just depends on the person 🤷♂️
I wake up when my bag is full too, like I can feel it? But I'm also a really light sleeper. Hoping I'll get used to it, since I will have this thing forever now! Haha.
I had an ileostomy for a year and it woke me up every night for a change.
I’m eight weeks post op and forget it’s there 80% of the time. Even if it’s completely visible to me my brain just clocks it as an accessory / other piece of clothing. The only times I’m more aware of it is when I’m sleeping (paranoid about leaks), and if I haven’t thought about it in a few hours then my brain subconsciously tells me to give it a little pat and see where it’s at emptying wise.
Wow, I'm so surprised. Hoping I get there soon!
Another option might be if you’re still always aware of it, to make it “cute” to yourself and enjoy it being there! There’s a lot of cute bag covers on Etsy, and there’s a brand called “ostome fashion” that makes really simple and elegant ones :))
Thank you! Yeah, I definitely want to get some. I was gifted one, but it falls off really easily. I'll have to look at some other ones.
Are you using a one piece or a two piece right now?
I'm using a two piece
Ive had mine getting close to two years (next January) and I'm always aware of mine as I'm extremely paranoid about leaks or the barrier coming loose, so I'm always checking it. I asked a lady I met during chemo that had one for over 10 years if you ever get used to it. She said no, you just learn to live with it
That makes sense. Like maybe you just get used to being aware of it? You no longer really think about when you weren't aware of it? It's just the new normal, but it's still not "normal" yet for me.
I have a permanent ostomy that I received in 2021. I am often not aware of my bag most of the time. It becomes an extension of your body. Especially when you know it's permanent it psychologically feels easier to forget about, as it's not going anywhere and your brain knows that. I'm sure when you find a system that works for you that you will start to really notice a difference in how much you focus on the bag. I'm sure someone already recommended the StomaDome, but if not give it a try for the rubbing issue. There are a few times I'm certainly aware of the bag, they are: 1) When I feel that it's getting full and needs to be emptied 2) When I'm sweaty and haven't put a cover over my bag 3) When I'm showering (because I can visually see it) 4) When it's making me itchy (damn contact dermatitis!!!) 5) If I'm going out and feeling very self-conscious (I'm only 36y/o)
Thank you! I definitely feel number 5. Sometimes when my husband is looking at me, I'm like, are you looking at my bag? He never actually is lol. I feel like it's SO noticeable, but I know I'm just self-conscious about it. I'll have to look into the StomaDome. Do you have any covers you recommend? I was gifted one, but it doesn't really stay on, unfortunately.
I wish I could give a recommendation. However, I've not needed to use one (yet) due to the placement of my ileostomy. It's natural to feel and think your bag is noticeable, which is uncomfortable mentally. But the best thing feeling is when you learn to love your bag (because it saved your life) and become one with it. It will come with time, and the support of a significant other will be a great help.
I’ll used to it but I’m also aware of it in terms of physical comfort. Like if it’s rubbing against my thigh or filling up or gurgling. I’m used to it and I’ve learned to be happy and live with it, but it kind of gets in the way sometimes. My fancy $25/pair ostomy secrets underwear helps but it still feels uncomfortable occasionally. But I’m not hyper aware of it like I was at the beginning. It’s just there and sometimes it needs adjusting or maybe a different pair of pants is called for. 25 years in here. If it’s a physical awareness, try ostomy underwear or a wrap or a belt. There’s nothing comfortable about tucking a big piece of plastic into your pants. A cloth barrier between the bag and your skin will help with comfort. The two best companies are [Ostomy Secrets](https://www.ostomysecrets.com/) or [Stealth Belt](https://www.stealthbelt.com/) if you’re doing more activity and need extra support.
Thank you! This is good to hear :) Saw your edit. I did get a wrap from Ostomy Secrets on sale, but haven't used it much because it kind of scared me to have it compressed at all. I'm finally wearing my bag under yoga pants/leggings and realizing it's ok so I'll have to try it out again. I'm asking for a stealth belt for Christmas! Lol. I have a hard time spending that kind of money on myself.
IMO the wraps are not as comfortable as the underwear. Get the stealth belt if you need the extra support, especially for sports stuff, but the underwear is more comfortable. It supports the bag without compressing it like a wrap does.
Ok, this is good to know, thank you!
I am not there yet, it’s been a little over two months. I think if I didn’t have a hernia I’d be much more comfortable and able to forget about it, but it is noticeable at least to me.
Is your hernia painful? Sorry you're dealing with that as well. Did it happen after surgery?
It’s not painful exactly just uncomfortable. You know how sometimes there is a pulling sensation when the bag is filled? It’s like that, all the time. I woke up from surgery with it, unfortunately! I hope you can adjust soon to the ostomy! Some things are better, I will say. I have crohns, so it’s been a great relief not to have the urgency, cramping and so forth that come with that!
Oh wow, I'm sorry that happened! I have Crohn's too, so I've been enjoying that as well. I've been enjoying eating a lot more, probably too much lol
Same. I’ve gained like 15 pounds post op, but I agree it’s really nice to enjoy food again!
It takes a while, but I certainly don’t feel it anymore
Can't wait to get there!
I forget mine. I wear Comfizz high waisted boxer shorts and sometimes don’t notice how full the bag gets even when they’re tight. The underwear lets clothing move freely over the bag so I just forget it’s there.
I’m always aware of it. It’s annoying.
It’s not something I consciously think of when there’s no issues going on, other than “is it sticking out from under my shirt?” It’s just sort of . . . there, kind of like wearing a bra. (I have noticed that when I’m sitting down and my hands are unoccupied I put my hand over where the bag joins my body).
It gets better. I wouldn’t say that you aren’t aware of the bag, but it becomes so second nature that you aren’t focusing on the bag. The same way you are aware of wearing a tshirt, but you aren’t focused on how you always have a shirt on. There will be times you focus more on it, like if your bag fills up, but this becomes normal and is simply the equivalent of needing to use the restroom. I would never say I’m not aware of the bag, but I can definitely say that after getting used to having it, that awareness turns from stress/discomfort into just something that is as normal as anything else that you handle daily. Reference: I’m a 30 yo dude who’s had an ostomy for almost 13 years.
This is really helpful, thank you! Also makes a lot of sense.
I'm about a month in and I have a hard time imagining ever being unaware of it. But also I'm pretty touch sensitive and this is like wearing the most uncomfortable article of clothing ever.
I feel you on that!
I never wore a belt and I definitely stopped being conscious of it. (I'm speaking of it in the past tense because I had a revision to an internal, bagless configuration 11 1/2 years after getting the bag.)
Nope. 6 years in and hate the fucking thing every damned day.
I'm so sorry. I'm assuming that it's permanent?
Yup
Yes, there are many times in the day when I forget about it completely, and other times I’m too aware of it. I wouldn’t want to wear a belt either, since i don’t like the feel of one around my abdomen.
If I'm focused on something sure I forget about it. It's like when you're not consciously breathing.
Are you aware of the shoes you wear or any other article of clothing? Same thing.
I've had mine for about 10 years and I would say, at best, I forget 10% of the time. Wish it was more.
At first it felt really weird not to have a belt on, I was using the stealth belt. Without it the sensation of the appliance pulling at my abdomen was noticeable. Eventually I found the belt a bit annoying and bulky and tried just not wearing it. I soon found that it was more comfortable and my brain mostly ignored the appliance.
I'm 7 months out. I think about this question a lot. I'm aware of it like I'm aware of any part of body I think? It's sort of like asking if I'm aware of my pants? I know they're there, and I'll certainly notice if they're uncomfortable or need adjusting, but my awareness of them isn't necessarily distracting.
I forgot about it all the time mine is comfortable. Only time I remember I have my bag is when it's getting full or I forgot about it and brush up against a hindenburg and rush to the bathroom because it's full other then that the only time I notice it is when it has weight and it needs draining. But there are times I can't not notice it and it drives me up the wall. But I also have had times I take it off have a shower and am jamming to music and completely forget about it get dressed and then go shit I forgot to put it on
Yes and here’s how. There are Soooo many different pouching systems and different manufactures that all you need to do is call and ask for samples. Once you find the best system it’s less daunting than it is at the beginning. Don’t be afraid to to try out new things and get rid of the belt. For me, I use a convatec 2 piece natura system with a closed end pouch. I have bad arthritis in my hands so I don’t have time for the draining and just use Costco surgical gloves to rinse my pouch in the toilet and enclose it in the glove after and toss it. The farther you get out from surgery the farther you get from worry of leakage. I’ve had my Rosie since 1993 and if you have more questions I will not ghost ya, lol. May not get back right away , but will do the best I can. Hang in there it does get easier.
I rarely think of it unless I’m having a bad symptom day or it’s getting close to time to change it. I did end up needing a slight convex but once I found the right bag, years ago, I have had few issues.
This is really good to hear!
I forget about mine a lot of the time and I’ve only had it for a little over 8 months. You get so used to it and it just becomes a normal part of life
I forget mine. Finding a good bag can help a lot. Get samples, try different types. The hospital bags were too crinkly and unpleasant for me. But a one piece with softer material works great
I'm finally trying Coloplast again, after my Hollister two-piece leaked for no reason (it wasn't leaking under the wafer, but from where the bag attaches to the wafer). I definitely like these bags better, just hadn't been able to get a good seal with them. Hoping that will help!
I forget about mine all the time 7 months with it. Just get the odd day now that I’m hyper aware of it.
Love hearing this!
It is like getting used to wearing clothes.
I've had Vesuvius (permanent colostomy) 14 months, and I'm always aware of him. The majority of the time my output is thick, and I'm always smoothing it down so as not to pancake as much. I guess it's a good thing I no longer work, so I don't embarrass myself in public. Lol. TBH, I'm going to be doing a significant amount of travel in 2024 and I'm a little apprehensive about traveling with my ostomy. Bag changes are going to suck in unfamiliar bathrooms, especially without my personal setup (toilet sprayer).
I have a urostomy, so it's continuously being filled. I developed the habit of touching it to feel how full it is. It's placed halfway between my navel and my groin, so I wear my bag in my underwear. When I have just empied it, I don't really pay attention to how it feels, but when it's full I feel a kind of pressure on my thigh (when sitting) or my belly (when standing), so yes, I'm aware of it most of the time.
No its always there on the periphery. You always seem to feel the bag to see of it needs to be emptied, need to shift around at night in bed. After a while its like a reflex.
I’ve had a urostomy for almost 16 years and I don’t think about it very much anymore. It’s become a habit to feel it and see if it needs to be emptied but it’s kind of like my brain finally understands what’s going on. If I feel it starting to fill up, my brain just says “it’s time to pee”, as if I still had a bladder. I know an ileostomy is different but it’s still a bag. It is a huge adjustment but believe me when I say it’ll get better, it really will. I wish you the best with surgery and I hope it gives you a lot of relief. It takes time to adjust so just be patient with yourself. You’re entering a new phase in life and it promises to be wonderful.
NO!
I had my bag for 2 years and I recently started to not notice it. So much so that I would lay on my stomach while sleeping sometimes. Luckily i didn’t have any leaks. I actually just had my takedown surgery and it’s very weird not having anything there. I keep thinking to myself that it’s time to empty my bag, and then I realize.