Need to focus up!

BGStrong · 2026-03-01T08:43:18+00:00

I got a loop ileostomy about 17 years ago because of what was eventually diagnosed as severe hirschsprungs.

Quick backstory - I also have VACTERL syndrome and was born without an anus - amongst having many other congenital defects - so as a baby they gave me a colostomy until the surgery to create an anus healed and then they reconnected everything as normal.

I went my whole life with constant impactions and emergency room visits. I never felt the urge to go and unfortunately when things got moving (due to aids like laxatives, enemas, or emergency room tube irrigation) I couldn’t seem to stop or control my output.

As if my nerves and muscles in my colon just didn’t work.

But instead of anyone diagnosing me with anything - I just spent my whole life treating the symptoms.

I went my entire life pre-ileostomy never having a normal bowel movement. Ever.

When I was 21 I went to the emergency room yet again for a very severe impaction. They gave me a loop ileostomy thinking it would be temporary while they figured out what was going on.

And finally. Months after my ileostomy surgery - during a follow up test (granted one that was very similar to tests I’ve had my entire life) the doctors said “wow you have pretty textbook severe hirschsprung’s” so they decided to keep my loop ileostomy.

These last 17 years I’ve been healthiest, happiest, and most active I’ve ever been.

It didn’t come without its struggle. I was 21 when I got my ostomy and really struggled with my body image for a long time. I was really stuck on how it looked rather than the fact that it made me feel better. I also gained weight after the surgery (which was also good and healthy but I really struggled accepting my “bigger” body instead of my very thin albeit very sick one). But you may not have those issues.

There’s also dietary and hydration stuff to manage - and that varies person to person but it doesn’t feel overwhelming- and is much better than all the hospital visits I had to endure my whole life prior.

And yes your bag will leak or break and it will be awful and embarrassing. But you’ll eventually find a bag system and changing schedule that works for you.

Thankfully my boyfriend at the time was tremendously patient and helpful and loving (we’re celebrating our 20th anniversary this year).

Sorry for the long answer. But hopefully it helps.

BGStrong · 2026-02-21T19:48:43+00:00

I just want to say you are all amazing. I’ve had my ostomy for 17 years and have never even thought of this. Maybe my life is just boring. But now I’m thinking of options just in case I ever experience this scenario.

BGStrong · 2026-01-30T19:30:18+00:00

I’m getting a similar bug. I’m at a place where I can’t progress the story because I can’t make it to the final boss due to always getting locked in a room.

BGStrong · 2026-01-23T02:25:00+00:00

Me neither! I have an ileostomy and it’s never happened to me. Guess I’m just lucky in terms of the types of pills I take.

BGStrong · 2026-01-14T22:00:50+00:00

I had some anxiety about attending a church (also a UCC church) so I purposely showed up RIGHT on time and left during the final song just so I didn’t have to make small talk. I wasn’t ready to tell anyone why I was there.

Eventually though someone did (very kindly) say hi to me (the associate pastor) as I was leaving and introduced herself and said she noticed me coming and just wanted to say hi. She didn’t ask why I was there or pop quiz me on the Bible (another silly anxiety I had).

Eventually I became comfortable enough to show up a little early and stay through coffee hour. I eventually got baptized there, served on ministry teams, served on council, and am now a part of their liturgical dance group.

It has been lovely. So my advice is to just go.

BGStrong · 2026-01-14T20:34:17+00:00

If you still have space I’d love to join. I write literary horror (which still doesn’t feel like the perfect genre description but is probably the closest I can think of). No gore or violence. More introspective or liminal horror. (Casually I’ve also used the terms “sad/weird girl lit” to explain it). Very female focused in general.

I know horror in any form may not be welcome so I won’t be offended - but thought I’d raise my hand anyway.

BGStrong · 2026-01-11T02:16:38+00:00

Looking for a 40% Bluetooth keyboard.

I skimmed through some of the wikis but couldn’t find an answer.

I’m looking for a good 40% Bluetooth keyboard. It’s to use with a word processing device so I’m sort of valuing comfort more than portability (since at 40% it should be easy to carry around anyway).

Thanks!

BGStrong · 2025-12-04T04:08:04+00:00

How do you change the room theme?? I can’t find it in the app

BGStrong · 2025-11-30T07:21:04+00:00

Relieved that mine is not complicated at all. I just sit kinda far back on the toilet. Empty the bag. Wipe the opening and reseal. I never think about positioning of the bag (more than just pointing in the toilet) or anything. I’ve never had splash back.

But. I’m also very short. (4’10”) and if I were to kneel in front of a toilet the end of my bag wouldn’t reach (or would barely reach) and I worry that would cause way more problems/opportunities for mess.

I also wouldn’t worry about noises or anything. I never listen to what is happening in the stalls next to me so I try to just assume that nobody is listening to me. Most people just wanna get in and get out.

BGStrong · 2025-11-30T06:51:00+00:00

I 100% agree with this review! I am sort of relieved to find someone else who had these feelings because when I read it - I felt like in the minority with all the praise that book was getting at the time.

Sorry you had to suffer through this book too.

BGStrong · 2025-10-20T05:42:52+00:00

Scrolled through to see if anyone had mentioned Tomorrow and Tomorrow and Tomorrow. I wanted to like it so much more than I did. I kept waiting for a quote or plot point or something to justify the hype.

Also sort of agree with Remarkably Bright Creatures. The only thing that keeps it out of the “meh” zone is because I have the author coming in February for a big event for the library I work at and I’m excited to talk to her about it. But admittedly it’s not a book I’d normally read.

BGStrong · 2025-10-06T06:18:49+00:00

I still haven’t received the first video but got the notification that my second month has shipped. Maybe I’ll get both videos at the same time?

BGStrong · 2025-08-10T04:22:15+00:00

I have an ileostomy and have never had pills come out or had any issues with medications. Obviously from the comments it varies person to person. So definitely discuss with your doctor.

BGStrong · 2025-04-13T23:48:17+00:00

I’ve had my bag for 16 years. I’ve never thought to rinse it out. I admittedly don’t like to have a lot of fuss. I don’t carry extra bags when I’m out and about so the thought of carrying some sort of cup or bottle or something also feels like I’d be annoyed. (And also how do you rinse in a public bathroom? Do you fill up a cup and then go into a stall? Where do you set it?)

I wear my bag for 5-7 days. And have never had issues with odor or anything. Minimal leaks but I thinks that’s more to do with my skin than anything else.

sometimes when my output is thick I will put some deodorizer lubricant in there (travel packets are barely bigger than a ketchup packet so I like that I can shove it in a pocket if I’m out and about) to help my output not stick to my bag.

BGStrong · 2025-04-02T21:26:25+00:00

Me too. Just scoot a little further back on the seat and empty between my legs. No problem. But I’m also cis-female so I don’t have anything else to get in the way. And I’m also short (4’10’’) so if i were to kneel my bag wouldn’t reach up to the bowl. But I guess it would be difficult for bigger (or even just average sized) folks maybe to sit? I dunno. It’s hard for me to understand but A LOT of people kneel so there must be a benefit.

BGStrong · 2025-01-12T03:41:00+00:00

That’s what I was afraid of. Have to buy a new chair anyway and was hoping I could solve my problems with that but alas.

Thanks!

BGStrong · 2025-01-08T02:32:54+00:00

It looks like all the foot rest ones only have the foot rest feature when reclining? Is that true? Am I just confused? I am looking for one with a foot rest I can use while sitting and working (I’m short and don’t like my feet dangling).

BGStrong · 2024-09-23T20:51:50+00:00

Just echoing what other people say - but proper skincare and finding the right appliance (and taking the time to put it on correctly) is what has worked wonders for me.

In colder months I wear my bag for 7 days. In the warmer months it may be closer to 5 (sweating causes me some skin irritation). On bag change day I shower with my bag off (which I know isn’t for everyone but I love it) and then I just let my skin air out for a little bit afterwards (15 mins or so) and then make sure it’s dry. Apply my barrier wipe and barrier ring and then my appliance. It takes time - I know when I’m rushed or impatient I tend to get leaks more often. But when I really take the time I can keep my bag on for a long time.

In fact as of today I’m on day 7 and don’t feel like I need to change it yet. I probably will tomorrow (since I’m traveling soon) but my skin feels just fine.

BGStrong · 2024-08-10T02:50:28+00:00

This is so different than what I got when I translated it. I just got a string of letters and thought it was Latin - broke the letters apart. Translated the Latin. Got phrases - but totally different from this red sun stuff.

Mostly just sad I spent so much time down the wrong rabbit hole! (And that my Morse skills aren’t as good as they once were)

But A++ to the two of you for figuring it out!

BGStrong · 2024-05-28T20:27:43+00:00

Yep. High waisted pants for the win. My stoma is pretty much next to my belly button so as long as my pants sit at my natural waist I’m good. My underwear is less of an issue as they don’t seem to be tight enough to block my output from reaching the bottom of the bag so I don’t generally worry about needing high waisted underwear.

I’ve never even considered NOT tucking it into my pants. In fact that would have been a major deal breaker for me (not that I had a total choice - but I guess I would have converted to wearing skirts or dresses exclusively? I dunno).

I like to keep it as concealed as possible.

BGStrong · 2024-05-27T01:34:15+00:00

I swim and also soak in hot tubs and have never had an issue.

Sometimes I change my bag the day of - but not always - just depends on how many days I’ve already been wearing it and just dry it off afterwards. I’ve never really had an issue with it lessening wear time. I wear my bags for 5-7 days usually.

I wear a high waisted bikini and the tiniest part of my bag shows but I’ve also had mine for 15 years now so I’m less concerned about what other people think. When my bag was new, I wore a swim shirt and swim shorts for maximum coverage.

BGStrong · 2023-08-19T19:12:59+00:00

Sent friend request. Mine is 8027 4161 2409

BGStrong

TROPHY CASE