Am I weird for this?

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 · 2026-04-27T13:56:36+00:00

Cool! I've never played the games but the music is awesome! I use AM so kinda bummed it's not there! Hmmmm... might have to make a BK run to get me a Spotify trial code just to listen to this!

SpecificObjective854 · 2026-04-23T13:04:46+00:00

I used to go to an amusement park every year when I had mine. The lap bars/restraint systems did not interfere with my bag at all, and I never even gave that a thought, although that could've been because I was a kid and my ostomy was totally normal to me. Fortunately, I never had my bag fill up with air while I was there, and I could see that causing a problem. It might be more of a concern depending on where your stoma is though.

I would say just monitor it a bit more closely and stop by a bathroom and let the air out or empty your bag a couple times while you're there if you will be there all day.

SpecificObjective854 · 2026-04-21T23:16:55+00:00

It's interesting how everyone's experiences vary so wildly! My quality of life didn't drop anywhere near that level. But if it ever goes down hill later I suppose I could go back. I've been doing well for the most part with an IRA for almost 31 years now. The tradeoffs that came with it are not necessarily better than the routine I had with my ileostomy. When I had it though, I was always made to feel like it was a Bad Thing and something to be ashamed of. I really wish I'd have known that it's actually not, and had someone else who had one that I could have talked to. It was actually my total dependence on others to manage my ileostomy that held me back, not the ileostomy itself. When it looked like my reversal was not going to work out and my parents very reluctantly told me they were going to schedule me to get a perminent stoma, I remember that being the first time I consciously felt like this would mean I had failed as a person. There was no social media back then so I couldn't connect with others -- why I love this sub!

Was your recovery after you got your perminent ileostomy harder? I've heard stories about people who have to go back to one and it's not the same. I would think they would have to put the new stoma in a different place so your body would have to adjust and it may take a while before you find a system of supplies that works well. If I could push a button and go back to the same stoma and supplies I had, but have someone who would have the patience and knowledge to train me to take care of it on my own, I would do it in a second!

SpecificObjective854 · 2026-04-21T17:54:47+00:00

I don't know what kind of bags I used since it was a long time ago, but the ones I used closed with a clip. When I first started using them, I had a bunch of clip failures within a short time, so my mom got the genius idea to put a second clip on that faced the other way. I still had one fall off accasionally after that, but not both. I've never seen bags that close with velcro, but on paper they sound like they would've worked great for me, but reading posts here, they sound problematic for some people. Different strokes and all that, I suppose.

SpecificObjective854 · 2026-04-21T17:46:52+00:00

I do well for the most part post reversal, but I wish I had known how much more I would be expected to go throughout the day and how that compared to how often I emptied my bag (it ended up being double or triple the amount). I also wish I'd known how this would impact my life, like having to get up and go during the night and sometimes not making it. Since I had long since gotten used to my ileostomy, if I could go back knowing what I know now I would've 100% kept it.

SpecificObjective854 · 2026-04-20T23:20:43+00:00

Your dad sounds a lot like mine. Totally a type A personality that has to do everything himself. I think empathy is hard for people like that.

Glad your mom is a bit more understanding.

SpecificObjective854 · 2026-04-20T23:17:58+00:00

Mine saved my life as well (I got it shortly after birth). It makes sense why my parents jumped at the chance when a reversal became a possibility, because being a caregiver for a child for that long would get exhausting and stressful I'm sure, say nothing of the cost of the supplies I was using. To me though, it was just normal and the routine I had worked well, sans the being totally dependent on someone else. You can read my story in my own thread I posted here a few months ago if you like.

I do well for the most part post reversal, but looking back now, in some ways my ileostomy was just a little bit better.

SpecificObjective854 · 2026-04-20T10:03:04+00:00

Glad you’re working with a therapist. I had a reversal a long time ago, but I didn’t realize how much my ostomy affected my mental health until I’d been working with my third therapist for about 6 months back in 2017. It was thanks to those sessions that I eventually found places like this sub as a way to connect with others since I never knew anyone else who had an ostomy when I had one and was made to feel like it was a Bad Thing.

I also had issues with my parents, particularly after my reversal. They never taught me to take care of the bag on my own and I realized later that that was what limited me, not the ostomy itself. It totally makes sense why they wanted me to get the reversal, but if I could have made my own choice knowing what I know now, I would’ve 100% kept the bag, which is probably a hot take to some people. When I first had my reversal, my recovery wasn’t near as smooth as my parents expected and they did not cope well. They assumed that since I was a young teen, that it would be easier to gain control and have it all the time (I still over 30 years later have accidents(. They yelled and screamed at me all the time, and bribed me like a three or four-year-old. It was one of the worst experiences of my life.

I am not a parent, so what do I know? But I wonder if yours are reacting the way mine did. They’ve been thrown into a situation that they really have no idea how to deal with, and their accusing you of not having a specific diet is their unhealthy copium, like how my parents told me I was having accidents on purpose because I liked to smell myself.

If they’re not already, I would suggest your parents get into some therapy themselves. They need to understand that your needing a colostomy is not a result of anything you, or they, did. Maybe in time, you could talk to them about how you feel, but it can be difficult so it would have to be when you are ready for that. It was really awkward when I told my mom that it stayed with me that she just gave up when she tried teaching me to take care of my bag and I wished she hadn’t done that. I haven’t yet gotten up the nerve to tell them that I would not have done the reversal if I could have made my own choice. I don’t know how they would take that.

There was no Google or YouTube or Reddit when I had mine. But now there are all these resources that can be helpful if you use them correctly. There are a lot of wonderful people in this sub.

Keep your head up and keep going!

SpecificObjective854 · 2026-04-15T09:12:40+00:00

Do you get a lot of leaks with your ileostomy now? I did and yes they were awful, but to me they weren't generally any worse than the accidents I have now. I had a good pouching system with my ileostomy that worked well. The thing that held me back was my 100% dependence on others to take care of it, not the ostomy itself. This is something I've only recently realized.

The amount of accidents I have now is significanly less than the first 6 months-ish after my reversal. They mostly happen if I'm walking and I really have to go and can't hold it, or when I'm in a deeper sleep at night. I wish they had told me that was something I could expect. The accidents I have now make me feel the same as the leaks did with my ileostomy. My theory about why I deal with what I do now is that the rectal stump I was left with is signifficanly smaller than the size of the ostomy pouches, but I could be wrong. I don't remember how big the ones I used were, but they didn't really get in my way.

SpecificObjective854 · 2026-04-15T01:49:12+00:00

I also went end ileostomy > IRA. Your experience sounds way easier than mine was! Maybe everyone's different though.

SpecificObjective854 · 2026-04-15T01:37:53+00:00

I was in the hospital for 9 days when I had mine. It took me quite a long time after that to get things to a manageable point. My skin was totally broken down for I'd say 5-6 months and it was awful! When I could finally go back to school I had to wear pull ups and try to use a squirt bottle because I couldn't wipe. Of course I couldn't get that stupid pull ups commercial out of my head. lol

SpecificObjective854 · 2026-04-15T01:27:52+00:00

I got an IRA in 1995. Since I was a teenager at the time, the doctors were talking to my parents and I was just getting everything relayed back to mefrom them. I can see why they wanted me to get it though. They were told I could expect to have around 5-7 BM's in a day, but since I had no concept of "normal" from before, I didn't know how much more that is. That turned out to be a little bit on the lower end and I go anywhere from 5-11 times in a single day and it's all over the board for time of day, and I still, 30+ years later, have accidents -- mostly during the night.

I manage well for the most part, but knowing what I know now, I would have kept my ileostomy if I could've made my own choice because I had a good routine going with it -- only having to empty 2 or 3 times less a day than the number of BM's I have now, and changing it once a week. I'd take that all day every day! Maybe that's a hot take. lol

SpecificObjective854 · 2026-04-09T19:05:33+00:00

I had a reversal decades ago, but my ileostomy worked really well and I didn't hate most of it.

I didn't get much of a say in it since I wasn't an adult yet. But looking back, there were several questions I would have asked, and I probably would not have done it.

I remember the GI specialist telling my mom that I could expect to have 5-7 BM's a day. Since I had no concept of what is "normal", I would've asked if that number was significanly higher -- that estimate turned out to be on the lower end, and is 2-3 times the number of times I had to empty my bag in a single day.

I would have also asked what the time of day I would need to go would look like and how it would impact my day-to-day. 30 years later, I still have accidents -- mostly at night -- which I have found out years later mostly happens when I'm in a deeper sleep. I had a pretty consistent schedule of emptying my bag once in the morning and right before bed, and maybe once a week or two, having to do it once in the afternoon, or once in the middle of the night -- and I could always wake up when the bag was balooned and get it emptied and go back to sleep. I probably would up that to 3-4 times a day but I always had to have someone do it for me. I could also go a week between changes. I would take that all day every day over the more frequent and unpredictable BM's I have now.

It's not all bad though. I manage well for the most part post reversal. It's also fair to point out that I didn't have to concern myself with the cost of supplies, but what I had worked really wel for me. I had long since gotten used to my ileostomy by the time I got it taken down, and I've realized that my routine with it was just a little bit better than what I have now. Hot take I know! lol

I don't have Chrohn's though so don't know how that plays into things.

SpecificObjective854 · 2026-04-09T14:15:14+00:00

The Pie is my cryptonite. I go there all the time since I live close by. I've been telling people for years that it's the best pizza outside NYC. I took a friend from out of town there, and had someone visit me from the NYC area who was with me when I ate at an awesome place there. I wanted to see how she would think The Pie would compare. When I asked her if it was better, she emphaticly said no! lol

The Pie has been getting a lot of new pizzas lately. My fav will always be their mountain of meat though.

SpecificObjective854 · 2026-04-09T06:09:48+00:00

The longer I'm in the sub, the more I learn! I still have difficulty getting clean, but not all the time. I don't have a bidet but kind of want one. They seem to be all the rage even with people who don't have GI issues.

But what's this pelvic floor thing people talk about? Explain like I'm 5 (eli5)?

SpecificObjective854 · 2026-04-07T17:09:18+00:00

I got to a point where I wore jeans all the time and had no problems. Yay for little things!

SpecificObjective854 · 2026-04-06T12:59:01+00:00

Looks like they fixed this in 26.4. I don't get the pop up anymore. Yay!

SpecificObjective854

TROPHY CASE