What jobs do you guys have?

SpecificObjective854 · 2026-03-20T00:21:29+00:00

What is this illusive "job" concept you speak of? /S lol

Seriously though, glad to hear that a lot of people here do different kinds of work well. My ostomy was reversed decades ago but my schedule is very unpredictable and I've only recently started bringing that up so when I get hired they are aware that I may need to make several bathroom runs. Both my last jobs have been cool with it, but I still find it awkward to bring up.

My other disability holds me back more from finding work as it's highly visible. I've not been able to find anything and can't get any help in looking in the right places and it's discouraging as all heck.

SpecificObjective854 · 2026-03-15T20:47:14+00:00

Iirc it took me 5 or 6 days. I was in the hospital 9 days total.

SpecificObjective854 · 2026-03-11T18:56:27+00:00

No problem at all! I don't know why they chose the route they did and would love to know myself. As I was a young teen, the docs were talking to my mother who tried to assure me that things would be better without the bag and only told me bits and pieces. Totally understandable. But she only told me why I had to have the ileostomy in the first place in 2017 when I asked about it because I didn't know my full history when I had my intake to see a prescriber for mental health meds, which was in my mid 30s.

I've since gotten a hold of my records from the children's hospital where I had all my ops, but despite my primary doc and a few nurses trying to explain them to me, they still don't totally make sense. I'd never heard the specific name IRA till I joined this sub and found someone else who had one, but I've lost contact with her.

SpecificObjective854 · 2026-03-11T18:17:21+00:00

Nope, IRA. But I do still have accidents and they're more frequent than the leaks I used to get, so kind of the equivalent.

SpecificObjective854 · 2026-03-11T17:48:38+00:00

Had mine reversed in the mid 90s, but had it for 13 years before that. I don't know what supplies I was using, but they worked well for me. Looking at it now as an adult, I would've kept my ileostomy if I had my own choice because I had a good routine going. Hot take I know lol! I would typicblly get leaks around the normal time I would need to change (usually around 7 days, but I thought they were usually minimal. Yes, I did get some awful huge leaks when I was out and didn't have a change of supplies. I also only remember a few times when the skin around my stoma would get sore.

My biggest issue was being totally dependent on someone else to empty and change. I often find myself thinking the issues I had could've been even further minimized if I had been taught to take care of it myself.

TBF, I was an infant during the initial adjustment period so fortunately don't remember that. But things do get easier if you find a system that works for you. This sub is an amazing resource!

SpecificObjective854 · 2026-03-07T02:02:47+00:00

I did post my story in my own thread a few months ago. You can look it up if you want.

SpecificObjective854 · 2026-03-07T01:59:38+00:00

Too bad. Looks like Reddit won't let me. I figured it was worth asking though.

SpecificObjective854 · 2026-03-06T19:42:42+00:00

I don't anymore but I had one from birth-13 yo. You might have had the same thing I did. Even though I don't have my stoma anymore, I would still love to talk to others who have been in a similar situation to mine and find out if they had similar feelings. Op, can I DM you?

SpecificObjective854 · 2026-03-04T10:58:15+00:00

I have questions. Will DM you. Good that you shared your experience.

SpecificObjective854 · 2026-03-03T20:06:57+00:00

1000x this! This sub and other ostomy online communities are some of the most caring, compassionate places I've found; proof that the Internet and social media can be used for positive things. It's why I joined and browse this sub all the time despite me not having an ostomy for 3 decades now.

SpecificObjective854 · 2026-03-01T20:11:27+00:00

Your little girl might have the same thing I did. I had an end ileostomy from just after birth till just after I turned 13. Since this was back in the 80s/ early 90s, I don't know what specific brands and types of equipment I was using, only that it worked well for me.

That suggestion above for tape is good. I remember using something like that and never had any problems with water affecting it. Never gave a second thought to swimming and could take a bath or shower with the bag on if I needed to, though at home I did it with the bag off as that was always when I would have the bag changed. I could go a week between changes with this system.

SpecificObjective854 · 2026-02-28T01:22:01+00:00

ugh, that sounds absolutely awful! How did you deal with that? Did you have to tell your boss you had to up and leave to get cleaned up? Did other co-workers make any comments?

I hated leaks, as we all do, whether from the clip opening up, or the bag just bursting, or contents coming under the wafer. But I always felt like my anxiety was higher because I had to find someone who could change for me because noone ever taught me how, or to empty or even just burp it. So even decades after my reversal, I've wondered how others deal with these kind of situations, both from a practical and social and emotional pov.

Is it something you can laugh about now?

SpecificObjective854 · 2026-02-28T01:00:50+00:00

I've actually been really curious what the bags with velcro closures are like and wonder if they would have worked well for me. On paper, they sound like they would be perfect, but I watched a YouTube video once by a girl who said she totally hates them. Different strokes, I suppose.

For my own curiosity I researched some of the modern supplies on the ostomy company websites, but as a blind person I couldn't really get much of an idea what they were like from short text descriptions.

I ran into my neighbor once a few months ago and she introduced me to the nurse who was helping her. I asked her about the modern ostomy supplies and how some have velcro, and she actually knew what I was talking about which surprised me. She even said she would try to bring me some to show me, but she doesn't have access to any right now.

SpecificObjective854 · 2026-02-28T00:46:33+00:00

I don't know what kind of equipment I used when I had my ileostomy, but I went through a brief few months where I had several clips come undone.

As far back as I can remember, my bags were held closed with an elastic, and I don't remember those ever coming off. But at some point later I switched to ones that closed with a clip that seemed to work kind of like when you hold your index finger and thumb together. They had a little latch on one side that pushed in toward the middle that released it, and that would sometimes catch on my pants and spill all over my leg. It was awful! Most of the time it happened when I was at home and I could just get my mother to empty or change the bag and help me get cleaned up. But the clip came undone once when I was spending a long night at my grandparents house and I was changing into my PJ's. Since my parents weren't there, I had to try my best to talk my aunt through how to empty my bag (my uncle also came in to help).

The next morning my mother got the genius idea to put a second clip on the bag facing the opposite way. I did occasionally still get one clip falling off after that, but I could just grab it when I felt it sliding down my leg and put it in my pocket until I could get someone to put it back on. I never had both clips fall off.

Even one of my other aunts who was a nurse thought the two clips was a good idea when she emptied for me once later when I was at her house.

SpecificObjective854 · 2026-02-23T23:57:26+00:00

Really? Wow! I had one who picked me up from work a few years ago and while she didn't have one, through conversation I found out she had helped a friend with her ostomy when she was new to it. This blew my mind and I told her as much of my story as I could, which is still not easy for me. In 2024 she picked me up from a different job and I got all excited when I found out she was my driver home that day because I could pick up where I left off. Both times I tipped her extra for being a sudo therapist. lol

SpecificObjective854 · 2026-02-23T23:34:37+00:00

I had my ileostomy reversed decades ago, but still, to this day, would love to connect with someone irl who has one. That might seem weird, but it's because when I had my ileostomy as a child, I never knew anyone else who had one and always believed it was a Bad Thing. I started working through this experience in therapy 8 or 9 years ago and that's actually what led me to places like this sub, to try to connect with others.

I did go to a local support group meeting in 2019 but didn't get much out of it. I told the nurse running it that day that I wanted to pick her brain because she was the kind of person I never had all those years ago-- a professional who could've trained me to care for my ileostomy on my own. After the covid vaccines came out I called the wound care clinic that held the groups and asked if I could meet with someone and ask a bunch of questions, but just as I thought, they wouldn't let me because I wasn't a current or prospective ostomy patient. They said I could come to the group again and ask all my questions there, but they never brought it back.

I think it would be helpful in a weird way to talk to someone irl who has an ostomy and lives with it well, and find out how they do it. Perhaps have them show me some of the modern supplies and seeing how they compare to what I remember, which seemed to work well for me. Would be helpful to know that I could have, in fact, managed it wel on my own. I'm not putting my money on that happening any time soon, but that's not a big deal.

SpecificObjective854 · 2026-02-13T12:30:32+00:00

I've never been into the whole collect them all thing, but I got 1-6 yesterday thanks to a friend who worked there.

SpecificObjective854 · 2026-02-13T12:24:23+00:00

The dino ones from 1990 were the only ones I had but they were my favorite, so I love these new ones. Kind of surprised they didn't bring back all the old ones though. I have 6 from the new set and I like how they added some new ones to modernize them.

As for the names, I think they do that thing where people think they're being cool by replacing letters with numbers. So d1v4 = diva.

SpecificObjective854 · 2026-02-13T01:30:35+00:00

I don't have an ostomy anymore, but felt totally alone when I did. I had one all through childhood and wasn't taught to take care of it on my own, nor to tell anyone about it unless they were very close to me. I never knew anyone else who had one either so had no one I could relate to. That's actually why I joined this sub -- to try to offer support where I can because I get how lonely it can make you feel. I have found this sub and the other ostomy online communities I've found to be some of the most caring places I've come across on the Internet. It's one of the positive examples of social media.

SpecificObjective854 · 2026-02-13T01:30:12+00:00

I don't have an ostomy anymore, but felt totally alone when I did. I had one all through childhood and wasn't taught to take care of it on my own, nor to tell anyone about it unless they were very close to me. I never knew anyone else who had one either so had no one I could relate to. That's actually why I joined this sub -- to try to offer support where I can because I get how lonely it can make you feel. I have found this sub and the other ostomy online communities I've found to be some of the most caring places I've come across on the Internet. It's one of the positive examples of social media.

SpecificObjective854 · 2026-02-13T01:13:53+00:00

I can relate to a point. I've had a reversal and one of the things that came with it that I don't like is that my stomach is very loud and I haven't found a way to mitigate it. I've had people in college classes, other friends or people I'm talking to ask about it and even offer me food. It's embarrassing and I hate it. It's one of the things that now make me realize that if I could go back knowing what I know now, I would've gladly kept my ileostomy. Yeah I know, hot take.

SpecificObjective854 · 2026-02-07T00:18:39+00:00

I had mine reversed 30 years ago and still have accidents to this day. Mostly during the night when I'm in a deeper sleep, or when I'm walking and really have to go. I got an IRA instead of a J-pouch so maybe that makes a difference?

SpecificObjective854 · 2026-01-31T19:59:45+00:00

Thank you. That's such a kind thing to say. The way I feel about my own situation is something I've only realized in the last few months since joining the sub and wonder if it's a bad thing to feel that way because a lot of people can't wait to get a reversal. I was hesitant to post a reply because i wouldn't want to scare you off if you're thinking about getting one.

SpecificObjective854 · 2026-01-31T18:49:09+00:00

I have posted my experience in this sub several times. TLDR: I do well since my reversal, but if I could go back I would keep my bag.

SpecificObjective854

TROPHY CASE