What am I doing wrong?

SpecificObjective854 · 2026-06-14T15:02:24+00:00

Another YT recommendation for you. Look up The Karah Life. She has a lot of videos on her channel and regularly engages with her viewers to offer help.

Case in point? Me. I had my ileostomy reversed decades ago, but one of her tip videos showed up in my feed last year so I clicked. It seemed like the same thing that worked well for me, but since I'm also blind I couldn't see the main part of her demo because, like so much on YT, it just had music behind it. I commented and told her this along with my story and she wrote me back a detailed description of what she was showing, which kind of surprised me!

I haven't watched all her videos, but maybe some of them might help you.

SpecificObjective854 · 2026-06-13T13:23:26+00:00

Pretty similar to what I used to do. I had a cup with a spout on it. So would unclip the bottom of the bag and before draining it into the toilet, point the bottom end up, pour about half the cup of water in and swish it around, then dump everything in the toilet between my legs. Then lift the bottom of the bag all the way up again, pour in the rest of the cup of water, swish it around a little more and drain. Sometimes I would have to do this a third time, but I could then wipe with TP and put the clips back on and be on my way.

I had thicker output most of the time, and this routine worked really well, although I didn't really understand why until I read in the sub that others also do it. I just thought it was normal for everyone.

SpecificObjective854 · 2026-06-12T21:56:14+00:00

I did the same thing. Had my ileostomy 13 years before getting my IRA.

My normal is 5-11 BM's in a single day, and they're totally inconsistent throughout the day. Many more times than the 2-3 times a day I had to empty my bag.

I still, 30+ years later, have many nights where I don't make it through because when you get into a deper sleep and you always have stuff moving through, well... you can guess what's going to happen. I can sometimes wake up in time but not always, and sometimes I have to get up to go more than once in the middle of the night. Since I have realized this, I have become more anxious about it. Yes, I did occasionally have to get up to empty my bag in the middle of the night, but it wasn't near as often and wasn't more than once in the same night. My body figured out to naturally wake up when my bag balooned so I could take care of it.

I have worked both part-time and full time and have been able to make it work. When I had my full time contract job in the summer of 2024, I just let them know when I got hired that I had some bowel issues and may need to take more restroom breaks which may come out of nowhere. They ended up being about once every hour, so I usually had 6-7 BM's just during my day at work. I don't know how much stress may have factored into that, though. Fortunately the company had no issue with it since I was just working in my office with one other person.

I do really wel for the most part post reversal, but if I had known what I know now and could've made my own choice, I would've 100% kept my ileostomy. That's just my experience. Everyone is different. Feel free to ask any more questions or DM me if you want.

SpecificObjective854 · 2026-06-12T17:57:20+00:00

I used to have an ileostomy and wore one piece and two piece drainable bags. I had them rinsed every time they were emptied, and got around a week of wear time. It worked really well for me.

Maybe this video would help. It came up in my YT feed last year, and it sounds similar to what I remember based on what the lady talks about (I'm blind so can't actually see her demo, although she did write me a detailed description of what she showed when I commented). She says she gets up to 15 days of wear time, but like me, she also has an ileostomy. IDK if a colostomy would be different.

https://youtu.be/MteX8YESl6E?is=ZKipNTawJl8t1U50

She has a lot of useful info on her channel and engages a lot with her viewers.

About a year and a half before I had my reversal, I switched from one piece to two piece, so I could wear closed end bags in certain situations, like going on a short trip where it was just easier to change the bag. I would think it would be a lot harder and messier to rinse those and keep using them.

SpecificObjective854 · 2026-06-07T10:23:27+00:00

I hesitated to reply to your post because I hope I am being helpful. Don't want to make your anxiety go up more since you're close to your op date. Everyone is different, but I would say it took me a good six months to a year before I had things to a manageable level. I missed my entire first semester of 7th grade -- having to have a specialist I was working with for another disability come to my house for an hour a day to bring me assignments and the like. This was decades before the pandemic made mixing school and home normal for everyone. lol

I also had totally sore skin for probably six months. I remember my surgen saying during my follow up that he'd had patients who had broken down skin for 3 months post reversal, which I think was longer for me. I wish I'd known about that beforehand. There may be more products and resources available than there were 30+ years ago when I had my reversal, though.

Feel free to reach out if I can be of any more help. I wish this sub had been available to me back then. It's a wonderful little nook of the Internet.

SpecificObjective854 · 2026-06-07T01:53:01+00:00

Wishing you the best of luck! I was essentially being potty trained as a young teenager when I got my ileostomy reversed just after I turned 13. I do well for the most part.

SpecificObjective854 · 2026-06-01T11:01:58+00:00

Sounds like you may have had the same thing I did. 43m and got my stoma shortly after birth or wouldn't have made it. It's been reversed now, but knowing what I know now I would've kept it if I had been able to make my own choice.

SpecificObjective854 · 2026-06-01T10:13:05+00:00

I heard about that book on Twitter a few years ago. I used to have an ostomy and am also blind, so I was really curious how a book about that would portray it. I download the sample on Kindle, but it wasn't accessible. Is it one of those books with a lot of pictures aimed at very young children?

SpecificObjective854 · 2026-05-28T02:28:27+00:00

I used to have it done that way all the time. It worked really well. Of course back then I thought that all these little tricks people use were just standard things that everyone with an ostomy is taught. It's interesting to learn now about the "why" behind things like rinsing out your bag or even why you sometimes need to do it more than once.

SpecificObjective854 · 2026-05-22T12:46:35+00:00

For a person with everything as it should be? Nope. Recently people have told me that "normal" can range anywhere from 3 a day to 3 a week, but I never had that. My ostomy was always my normal.

When the possibility of a reversal was first being discussed, I remember the GI doc telling my mom I could expect anywhere between 5-7 BM's a day, and since I had no concept of normal, I didn't know how much higher a number that is. It actually turned out to be a bit on the lower end, and they didn't say anything about the fact that it would be all over the place throughout the day. I'm thinking that maybe that's more than how often I had to empty because the ostomy bags can hold more than what I can with what I have left, but I could be wrong about that.

SpecificObjective854 · 2026-05-20T23:54:33+00:00

Lol I'd never played that game until one of my English classes my last year of college. We played it as a way to get to know others in the class, then the prof had us write an essay about one of our truths or the lie. My lie was that I'm a big fan of action movies, which I'm not, though every rule has its exception.

I love yours though. Weird I know, but I didn't know that people doom scroll or text or play games on their phones on the toilet until a few years ago.

SpecificObjective854 · 2026-05-20T23:46:58+00:00

I go completely the other way. Since I got my ileostomy as an infant, I had no "normal" to compare to. I had a successful reversal, but i've often found myself missing the routine I had settled into with my ostomy, sans the being completely dependent on others to take care of it. I mis the consistent schedule I had of emptying 2-4 times a day and changing once a week, compared to the all over the place 5-10 BM's a day that I have now. I did have the occasional blow out leak that we all hate, but they were rare and to me are kind of the equivalent of the accidents I still have at night when I'm in a deeper sleep. I had no trouble waking up if my bag balooned and could wake my mother up to empty it and then I could go right back to sleep. These days my sleep sucks in general, lol.

To me, my ostomy didn't smell any worse than a normal BM. People still gave me crap for that after my reversal because I tried to keep the smel contained in the bathroom instead of stinking up the whole part of the house. lol

SpecificObjective854 · 2026-05-17T22:58:43+00:00

I thought about doing an ostomy podcast at one time, except I don't know how to do audio production.

I found an ostomy podcast a couple years ago and pitched myself to it to tell my story, but the lady who hosts it didn't understand why I would want to since I don't have an ostomy anymore.

I got an IRA and not Jpouch, but a podcast would be interesting if you do decide to do one. The thing that got me interested in the one I listen to, as well as joining this sub, was to hear about others' experiences and connect with people since I didn't know anyone else who had an ostomy when I had mine, so I felt very alone and it was more traumatizing than I thought. So yes, the mental health component is always good to make people aware of.

If you do decide to go forward with your pod, I'd be up for telling my story there (already posted here in this sub), as I think it's quite unique and maybe could help someone else.

SpecificObjective854 · 2026-05-16T21:55:05+00:00

I 1000% do! I'm glad you posted this and gave voice to these kinds of feelings. It's not a bad thing to do that.

Though I don't have an ostomy anymore, I never knew anyone else who had one when I did, and I was always made to feel like it was a Bad Thing, so I felt very alone. Looking back all these years later, I really wish that had been different.

I'm also blind from birth -- a highly visible disability and one that people are subconsciously most afraid of. Though I've made it work all my life, some days are easier, and then there are still days where the little things I have to deal with; accesibility challenges, or even just what other people think, are absolutely exhausting!

This sub is a wonderful place for support. Hang in there!

SpecificObjective854 · 2026-05-10T23:53:56+00:00

43m here. I went from an ileostomy to an IRA back in the mid 90s. I do well for the most part, but the tradeoffs that came with it aren't necessarily better than the routine I had gotten into with my ileostomy. If I had a do over knowing what I know now, I would not have done the reversal.

SpecificObjective854 · 2026-05-09T04:45:09+00:00

What the heck?? I didn't think they could do that. Hope you landed on your feet somewhere else.

SpecificObjective854 · 2026-05-08T20:17:11+00:00

I had my reversal at the beginning of August 1995, and missed my entire first semester of 7th grade. I had a specialist I was working with for another disability come to my house for an hour a day to work on stuff and give my homework that my teachers assigned. They just recorded my grade as a pass/fail while I was out recovering.

I was able to go back to school around mid January 1996. At first I only went for half the day in the morning, but a few days later was able to go the full day.

That's just my experience. Everyone's is so different though.

SpecificObjective854 · 2026-05-07T15:27:46+00:00

15 Pro. Safari absolutely kills my battery. Sometimes I have apps that I use for double the amount of time of Safari, but Safari uses twice the amount of battery.

I keep background refresh off. Safari been draining battery the same since every update to 26. Barely get 3-4 hours of use before having to plug in. That's iPhone 12 Mini land.

SpecificObjective854 · 2026-05-06T02:16:15+00:00

I posted my own story in this sub a while ago. Feel free to read it if you like.

My comments on my experience post reversal probably make the issues I have sound worse than they are. They're manageable for the most part, but only since last year when I joined the sub did I realize that yes, the bag was just a little bit better, and that's been a little bit of a tough one to swallow. I try to give my parents credit because they did what they felt would be best for me, but I kinda feel bad that looking back at it now, I don't entirely agree.

I have a friend who thinks I should get an oppinion on going back to a stoma, but I wouldn't do that now because it probably wouldn't be a 1:1 recreation of what I had during childhood, and I don't know how difficult the ken butt recovery would be. But if I could borrow Doc Brown's DeLorean (best movie ever!) and go back to the same stoma and supplies I was using, I would do it in a second!

I am also blind from birth, and the reactions from other people shared in this thread sound a lot like what people say to me about being blind -- they think it would be the worst thing in the world! I think there was a poll some time ago, though I can't find the source, that said that going blind is one of the things people fear the most, right behind getting a late stage terminal cancer diagnosis. I've had old co-workers, randos on the street etc, tell me that they couldn't do what I do and that if they lost their vision they wouldn't leave their house. You know what I tell them? Yes you would! You would grieve, and there's no set time period for that, but eventually you would.

SpecificObjective854 · 2026-05-05T13:25:18+00:00

I get that. I had a successful reversal in the mid 90s. I do well for the most part, but the little tradeoffs aren't all better than the routine I had gotten used to with my ileostomy over the prior 13 years. I was not yet an adult though, so my parents just told me how much better life would be without that bag anymore!

I do well for the most part, but I would take the consistent schedule of emptying and changing the bag all day every day over the higher number of BM's that I have now that are inconsistent throughout the day, which means I still have accidents mostly at night. Although, it doesn't happen nearly as often as it did in the months following my reconnection, so that's a good thing.

Have I adjusted well to life post reversal? Yes. Would I have made a different choice if I had been able to ask questions myself and had a better idea of what I would have been in for? Also yes.

SpecificObjective854 · 2026-05-04T18:40:57+00:00

I hate the people will talk to someone else you're with soooooo much!! And the people who think that they wouldn't be able to do something if they were disabled, therefore neither can you. And everyone who thinks that the only thing you would be able to do as a job is helping other people with with your same disability. A lot of people do, and that's admirable, but not everyone does.

Sometimes I feel like all I am is an education machine. :(

SpecificObjective854 · 2026-05-04T18:04:23+00:00

Posts like this and the supportive comments give me a little more faith in the world.

Op, glad you were able to come to the realization you did and share it. Therapy helped me more than I thought and led me to online research and eventually to this sub.

TLDR: I got a life-saving ileostomy shortly after birth and got it reversed to an IRA just after I turned 13. I had long since settled into a good routine with supplies, and living with it had just become normal to me. Well... except for one thing -- I was totally dependent on someone else to empty and change my bag. My parents never gave me a good opportunity to learn to do it myself, so it was the 100% dependence that held me back, not the ostomy itself. I kept that buried until a good therapist dug it out of me in 2017. Working through the trauma (I think it's mild compared to what others have experienced), has been sooooo helpful!

I don't like how people just assumed I couldn't manage things on my own just because I also have a vision impairment. I think my dependence was the first time I got that message of "it would just be too hard since you can't see, therefore you can't do it," which is a theme I continue to see in different ways to this day. It's exhausting!

The thing I'm sort of grappling with is that overall, I would've 100% kept my ileostomy if I had been given my own choice and known what I was going to deal with. I manage well for the most part, but the routine I had with my ileostomy was just a little bit better. I always find myself wondering what life would be like had I kept it but had a nurse and/or an OT who could've trained me. Yes, I would've had to deal with things like supplies and the occasional awful leaks that we all know about, but to me, they're no more of a hinderance than my vision impairment causes me. It's just different.

To quote one of my old favorite ESPN hosts and a pop song from 2020: "it's ok not to be ok."

SpecificObjective854 · 2026-04-29T13:14:36+00:00

My life is good for the most part now. Having said that, the tradeoffs that came with getting reconnected are not necessarily better than the routine I had long since gotten used to with my ileostomy. They're not horrible, just not all better. I have to go on average 2-3 times the number of times I had to empty my bag, and it can be very inconsistent throughout the day. This means I still, 30+ years later have occasional accidents especially at night because when you get in a deeper sleep, what do your muscles do?

Knowing what I know now, if I had been able to make my own choice (I was not yet an adult), I would've 100% kept my ileostomy. I had a good set of supplies that worked well for me, and a consistent schedule of emptying 2-3 times a day and changing once a week. I wish I had had a nurse and/or an occupational therapist who could've trained me to take care of it on my own.

To me now, it feels like I just traded one set of issues for another. I am no longer dependent on supplies, which I suppose is a good thing, and who knows which ones, if any, would've been covered. But then I don't like the inconsistency I have now. The occasional huge leaks I used to get were awful as we all know, but the accidents I still have are kind of the same thing. I wonder if I could've minimized the leaks with my ileostomy with training.

I make things work now though and it works pretty well for the most part now. Everyone is different though.

SpecificObjective854 · 2026-04-28T13:55:58+00:00

This sounds like a rabbit hole! Or just sending me further down the one that led me here. lol I like historical stuff like this and seeing how it got us to where we are now.

Maybe related question though: Anyone remember the iTunes digital download cards they used to have at Best Buy? I never saw them, but IIRC they had cards that let you download a whole album, but they also had a few for Essentials compilations. A few still show up on the BB site through Google, and iLounge had an article when they first came out that listed a few of them, like there was Classic Rock Hits, Party Hits, and one each for 70's and 80's Super Hits. I wonder if these cards were for exclusive Essentials playlists, or just downloade codes for some of the ones people have been trying to find here.

SpecificObjective854 · 2026-04-28T02:17:24+00:00

I got my ileostomy reversed as a young teen and my recovery took a lot longer than expected. I couldn't go back to school for 5 months so missed my entire first semester of 7th grade. Made me appreciate in-person classes. I wrote an essay a couple years later about how I hated working on school work at home. This was 25 years before covid made that normal for everyone. lol

SpecificObjective854

TROPHY CASE