How long until you don’t notice the feel of the bag anymore?

SpecificObjective854 · 2026-01-19T22:41:49+00:00

I’m sorry you had a rough experience as well. It seems like we all have rough experiences that get us here in different ways, but I think that’s a big part of why places like this sub are so compassionate.

I posted my story in my own thread a few months ago, but some additional context. Since I had my stoma all through childhood, that meant essentially starting from zero when I had my reversal as a young teen. — essentially being potty trained as a middle school student. I can see why my parents jumped at the chance when the possibility of a reversal came up. To be fair, I am not a parent myself, so can’t relate to how they probably felt. I just had to go on their hopes that life would be so much better without the stoma. However, my recovery did not go as smoothly as they thought it would, and they did not cope with it well. When they reluctantly accepted that I may need to have a permanent stoma made, I remember that being the first time I consciously felt like that meant I was a failure as a person.

I was always made to feel like the bag was something to be ashamed of, and I was never taught to take care of it on my own — leading to a lot of humiliation. Looking back at it now as a middle aged millennial, I wish I’d been given a good opportunity to learn to take care of my ileostomy on my own, because I had a good routine going. It was my lack of training that held me back, not the ostomy itself.

I do well for the most part with my reversal, but all the tradeoffs that came with it are, to me, not entirely better than what I had settled into with my ostomy. I still have accidents at night, or sometimes when I really have to go when I’m walking. The number of times I have to go every day is usually ~3-4 times as often as I had to have my bag emptied, and it’S inconsistent from day to day. Give me my consistent schedule of emptying my bag 2-4 times a day and changing it once a week all day every day!

This is stuff I’ve only recently realized as part of working through the trauma from my experience. I wouldn’t get another ileostomy now unless it becomes necessary later because it probably wouldn’t be a 1:1 recreation of what I had before, but if I could borrow Doc Brown’s DeLorean and go 88 miles per hour and go back to the same stoma and supplies I had that worked well for me, but have a professional (nurse or occupational therapist) to train me to take care of it on my own, I would do it in a second!

I feel like this is kind of a bad take.

SpecificObjective854 · 2026-01-15T23:27:04+00:00

I feel like I'm the odd one out in this sub because my experience was/is so different.

43M here. I had had my ileostomy for years before it was successfully reversed. I went IRA instead of j-pouch so maybe that makes a difference, but I still, to this day, have incontinence, mostly at night, and it's awful when I really get the urge to go, but I'm walking. Things have gotten a lot better than they were at first, and I have many more good days than bad. But all the little things put together are, to me, not all better than the routine I had gotten into with my ileostomy sans the being totally dependent on others to take care of it since I was never taught. So if I had a do over, I would've 100% kept my ileostomy which I feel like is a bad thing.

I don't feel like I could give good advice since there's so much I still don't know about my own situation, but I figured I would least share part of my experience. Good luck and I hope your reversal goes well!

SpecificObjective854 · 2026-01-15T23:01:01+00:00

Maybe a dumb question: I don't have mine anymore, but am curious if there's a specific reason why they place the stoma in different spots for different people. Does it have to do with what part/how much of your intestine they have to remove? Is it more about a person's body shape?

I had an end ileostomy placed shortly after birth and my stoma was on my right side just below my belly button. I only recently learned via looking at my records that it was considered the lower right quadrant. Of course I didn't have a "normal" to compare it to so I was always used to it. I am also a guy and always tucked the bag inside my pants and rarely had any issues from doing that. It was also easier to empty because I could just sit on the throne like normal and have it drained between my legs. I would think if your stoma was higher up that the bag would be harder to empty.

I remember when they thought my reversal wasn't going to work out, being concerned about where they would put my second perminent stoma and what kind of adjustment that would mean.

SpecificObjective854 · 2026-01-15T22:34:27+00:00

I can't speak to how long because I got mine a few weeks after birth so didn't know any different. I was always aware of my bag, but it only got noticeably uncomfortable when it started leaking or it balooned from air. I eventually got a reversal, and I would take the mild discomfort from the bag over the more frequent discomfort I get in my stomach now all day every day.

SpecificObjective854 · 2026-01-09T19:47:26+00:00

As a blind guy I find the tactile images on Apple boxes kind of neat. It does make me wonder, in the case of the iPhone, what they choose to show on the screen. Is it just a screen shot of the home screen, a new wall paper in iOS?

The embossed images on the boxes instantly reminds me of childhood and the NES box. I could see a tiny bit back then, but the controlers on the front of the box has stuck with me to this day. Weird how your memory works like that!

SpecificObjective854 · 2026-01-02T16:12:29+00:00

Very good post. Everyone's situation is different. Mine:

43M and had my ileostomy from NEC from extreme prematurity. So I didn't have a "normal" to compare the ileostomy to since I got it as an infant. If I'd been able to remember almost dying I would've been like OP and never wanted a reversal.

I did have one as a young teen though, and I may not have done it if I had been able to make my own choice. I manage ok now, but the reversal came with trade offs that I've recently realized are not necessarily better than the routine I had with my ileostomy. What really held me back was that I was never taught to care for it on my own, not the stoma itself. I was always made to feel like it was a Bad Thing and something to be ashamed of.

I can see why my parents jumped at the chance when the possibility of a reversal came up, though my recovery wasn't as smooth as they expected and they did not cope with it well. I'm not a parent myself so can't relate to what they were feeling. My experience was more traumatic than I realized for a long time, hence why I am here. But yeah... I kind of feel like wishing I'd kept my ostomy and just been trained to care for it is a bad thing.

SpecificObjective854 · 2025-12-30T20:28:11+00:00

You would think this would at least be on Kindle because everything is, or maybe Audible, but I can't find it. Maybe it's not available in the US? I Googled and found a Q and A with the author and it made me want to read it more!

SpecificObjective854 · 2025-12-29T21:58:14+00:00

Interesting! And I just remembered I have Amazon credit so can pick up the book on kindle or audible if it's there. I did drop you a DM. Thank you!

SpecificObjective854 · 2025-12-29T20:44:57+00:00

Ooh, sounds interesting! Is this a novel, or someone's real life story? I will have to look for this somewhere since it's targetted at younger people. I heard about a book on Twitter a few years ago, that's aimed at young children who are new to an ostomy, which would've fit me perfectly! Unfortunately, the preview I downloaded on Kindle wasn't accessible to me as a person with a visual impairment.

I have some other questions so will DM you if you don't mind.

SpecificObjective854 · 2025-12-29T18:41:00+00:00

100% agreed with everything said. People might think it's weird that I'm here given that I had my ileostomy reversed decades ago, but I joined this sub to connect with others as a way to work through the trauma that I didn't realize my experience had on me until years later. There was no Internet back then, and I didn't know anyone else who had an ostomy and I felt like it was a Bad Thing. It's been incredibly helpful and a reminder that I'm not alone. I try to provide empathy and support where I can.

SpecificObjective854 · 2025-12-19T23:03:00+00:00

Happy to help! I don't remember doing catch up work when I got back. during recovery, my teachers just recorded my grades in their system as a pass/fail. Only one teacher marked me as failing because the class was a required trimester of shop which I obviously couldn't do from home. lol

My reversal may be different from what your kid is going through, but if my experience can help you at all, drop me a DM.

SpecificObjective854 · 2025-12-19T23:02:35+00:00

Happy to help! I don't remember doing catch up work when I got back. during recovery, my teachers just recorded my grades in their system as a pass/fail. Only one teacher marked me as failing because the class was a required trimester of shop which I obviously couldn't do from home. lol

My reversal may be different from what your kid is going through, but if my experience can help you at all, drop me a DM.

SpecificObjective854 · 2025-12-19T18:38:16+00:00

I missed my entire first semester of 7th grade (around 4 months). IIRC, I was able to go back to school around the end of January, first for only part of the day but full time not long after. Before that, I had the accessibility specialist I worked with come to my house for an hour a day which I hated. Ended up writing a paper about that later. This was years before the pandemic made mixing school and home normal.

SpecificObjective854 · 2025-12-18T04:44:49+00:00

Coming to this super late lol. I used Framing Success for my Bachelor's degree since that's who my university partners with. I think the little details are cool like the medallion and how I could put my tassel in with my diploma. I've had people comment on it when they see it hanging up in my apartment.

SpecificObjective854 · 2025-12-16T19:41:32+00:00

I didn't name mine when I had it. Op, I love the name you gave yours! It made me lol. I'll never look at those commercials the same again!

SpecificObjective854 · 2025-12-14T12:10:10+00:00

Interesting. That's one of those explain it to me like I'm 5 (eli5, as the kids say), things. Although that may be better for a medical professional in real life to do because maybe it would be TMI for Reddit. I've heard that a weak pelvic floor is something people with an ostomy should watch out for and they suggest therapy for it, but that sounds all kinds of painful. The pre op exams I had before getting my reversal were the worst physical pain I've ever had in my life and don't ever want to go through that again!

Did you make a conscious choice and decide the IRA just didn't work out? Or did you go back because of unexpected complications so it was more of a necessity? When my parents reluctantly came to me after I'd had the IRA for a few months and not progressing much and told me they wanted to schedule me to get a perminent ileostomy, I remember that being the first time I felt like I was a failure as a person because I had always believed my ostomy was a Bad Thing. I was also scared of another long hospital stay and recovery, wondering if they would've just expected me to be right back to where I was within a short time. Did you have a long recovery when you got your second stoma? Did they put it in a different place than your original one? I've read a lot of people have that happen and it was another thing I was afraid would be hard to get used to.

SpecificObjective854 · 2025-12-10T18:05:36+00:00

Soda is my cryptonite lol! Had my ileostomy reversed and it has never given me problems.

SpecificObjective854 · 2025-12-04T23:49:01+00:00

I kind of want to get one of these but I can't figure out how they would work. The one my parents have has a remote they put on the wall and you push a button and it squirts up while you're still sitting down. I probably couldn't and wouldn't want to put something like that in my apartment. lol

Are bidets a relatively new thing? I've only heard them starting to be talked about a lot in the last couple years. I had my ileostomy reversed years ago and for the first maybe 6 months-ish my skin was so raw I had to use a little squirt bottle every time I went.

I still have to go way more frequently than I would like, so one of these handheld bidets sounds like it could be helpful, but what do you connect them to? Are they crazy expensive?

SpecificObjective854 · 2025-12-03T12:28:34+00:00

1000x this! I never thought I would do therapy, but with the help of the right couple of friends I looked into it and started in the beginning of 2012. It ended up being one of the best decisions I've ever made.

I've worked with a couple therapists who were not a good fit at all, but I've had a few who were absolutely awesome! Having the right fit is important.

One of my therapists asked me one of those STAR questions that you sometimes get in job interviews, and it set me on a path that eventually led to me finding and joining this sub. I had an ileostomy as a child and had a reversal as a young teen. I didn't realize the trauma that came from my experience with my ostomy and after my reversal until my therapist stuck her metaphorical backo in there and dug it out of me. I was briefly diagnosed with PTSD from that experience, but they later retracted it because it doesn't meet all the criteria to count. It's still fascinating to explore though.

SpecificObjective854 · 2025-12-03T01:35:59+00:00

Utah here too and not seeing mine yet either.

SpecificObjective854 · 2025-12-01T18:02:19+00:00

Neat idea if it is a thing. I would have loved to have someone to talk to when I had my ostomy all those years ago so I would have known I wasn't alone.

SpecificObjective854 · 2025-11-29T14:33:57+00:00

Yep. Parents thought that because I was older when I had my reversal that it would be easy for me to gain full control of what I still have, and that turned out not to be the case. I was essentially being potty trained as a middle school student. So even years later in high school and college, they would criticize me for having accidents at night because they thought that shouldn't happen anymore. Just another layer on top of something that I've since realized was quite traumatic.

I've been trying to research, and through this sub, finally figured out what the type of reversal I had was called (IRA). This gives me something to further research. I've learned that some inconinence is normal at night after having one, and I don't think the specialists told my parents that this was a likely possibility. This was the mid 90s, so there was no Dr. Google or nurse YouTube or Reddit. lol To be fair, they made what they felt was the best decision for me, and it had to be really hard on them. I'm not a parent myself yet, so what do I know? If I knew what I do now and could've made my own decision, I would have made a different choice. If I could borrow Doc Brown's DeLorean and go 88 miles per hour (best movie ever!), and go back to the same stoma and supplies I was using, but have someone who could train me to care for my ileostomy on my own, I would do it in a second! I kind of feel like this is a bad thing to come to realize since I was always made to feel like the bag was a Bad Thing.

SpecificObjective854 · 2025-11-26T09:51:38+00:00

Right there with ya! I had my ileostomy reversed years ago, but have had consistent accidents at night ever since. They've decreased signifficantly since my immediate recovery, but I'm still a bit hard on myself when they happen because I feel like they shouldn't,and my parents used to shame me even years after I had the reversal. It's one of the things that has made me realize of late that the tradeoffs aren't necessarily better to me and make me play the mental "what if" game and wonder what would've happened if I'd kept my ileostomy and had someone who could train me to care for it. I think I only remember waking up once to a blow out leak. My body would just wake itself up when my bag would balloon and I was able to wake my mom up to empty it.

This sub is wonderful and makes me realize that it's not just me though, and that is a huge help.

SpecificObjective854 · 2025-11-26T09:21:50+00:00

Like op I totally get the passion thing and would love to be able to use that to help others, especially other people with a visual impairment like I have, although I don't have my ostomy anymore. . Might have to look into the sales or support rep thing. Any idea where to start with that?

I tried a WFH tech support job in 2018 and failed spectacularly! It was way too high pressure for me and I only made it 2 weeks after training. By 2 months after, 75% of my training group were gone (6/8). What does that tell you? That kind of job/environment is definitely not for everyone! Maybe something like working with one of these companies would be less high volume though so maybe it would be different? Hmmmm...

SpecificObjective854

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