Query about IC and wheelchairs

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kerry

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I am thinking about writing a mainstream story in which the main character is in a wheelchair. I'm considering making her incontinent. Should I do so, I'm wondering about how being unable to use one's legs affects incontinence. I know I have read posts from wheelchair-bound people who use diapers (rather than catheters or colostomy bags or whatever). My question is: as you move through the world--working, shopping, dining out, etc.--how does this work? Or do you need a helper to change? Or what?

Forgive me if I am asking really stupid questions.

Kerry
 
kerry said:
I am thinking about writing a mainstream story in which the main character is in a wheelchair. I'm considering making her incontinent. Should I do so, I'm wondering about how being unable to use one's legs affects incontinence. I know I have read posts from wheelchair-bound people who use diapers (rather than catheters or colostomy bags or whatever). My question is: as you move through the world--working, shopping, dining out, etc.--how does this work? Or do you need a helper to change? Or what?

Forgive me if I am asking really stupid questions.

Kerry

Hi. My wife is mostly wheelchair bound, though she's continent, so I can't help in that regard. My wife is a diabetic amputee and we do home dialysis, so she doesn't pee. She does get around on her prosthetic leg, but she spends most of the day in her wheelchair.

My wife and I have tried to not make her wheelchair the center of her life, if that makes sense. I remember when she first was confined to it, and we suddenly became the wheelchair couple. People try not to stare, but it's there. We'd go to a restaurant, and it's difficult to get past people, and tables and chairs. It was impossible to do Christmas shopping in stores because we couldn't get through the sea of people.

Walking people when shopping for clothes just move between the close isles of clothes and racks, but a wheelchair doesn't fit. It's incredibly difficult to go to a store. You have to find a handicapped parking lot that has the slashmark bars so you have the room to move the wheelchair to the passenger door because it's hard to get from the car seat to the chair. Then after using the ramp, you realize all public doors open outward, into the chair. I can't open and hold the door, hold the handles to the wheelchair and wheel my wife in. She has learned to help with the door, even though most doors seem to have a door return with 100 lbs. of torque.

So my point is that everything is a challenge and everything takes thought. You think ahead for everything you want to do. When my wife came home from the rehabilitation hospital, we both were scared. She barely had the strength to use a walker, lifting herself off the ground with her arms and hands especially since she is a little over weight. Transferring oneself from a chair to a bed, or a toilet or commode took planning. We solved it by placing the commode between the bed and her wheelchair and her using the walker. Washing is a similar challenge.

I think having to wear diapers would be similar. From my perspective, the impact of having physical challenges is an almost equal impact for the caregiver. I was with my wife at the doctor's when they told us the leg would have to come off. I've always done wound care on my wife's feet, and I felt like I had failed, but I had to be strong for her. I promised her I would make this work. I gave her my word and I was able to keep it. The caregiver can be another part of your story.

My wife's feet problems started ten years ago and I worried about it every day. The anxiety was always there, gnawing away at me. It's what led me to write my novel. In my novel my protagonist Katelyn realizes that bad things are always happening to someone else. There is the kid at school in a wheel chair, the kid with muscular dystrophy, something, but never you. It never happens to you, and then it does.

I hope that helps. I'm always available to you if you need insight from someone who deals with this at a similar level.
 
I am incontinent and also a wheelchair user. It happened from a head on car wreck back in 2006. I can walk vary little with the support of walls furniture etc. My right leg goes out at random so it's easier when out of the house to use my wheelchair. I am fully incontinent of both. I have what's called neurogenic bladder and bowel, another words I don't have control. They did offer me a Foley catheter and a colostomy bag but I didn't want the surgery nor more UTIs than I get already. At first I was uncomfortable about my diapers and changing in public but after talking to others on here I become accepting of myself and situation that wearing full time and changing in public doesn't bother me anymore.

Each person has different amounts of abilities and disabilities depending on where they were injured.

Feel free to personal message me for more information if you would like about my situation.

Here is my wheelchair: (can you spot the ABU sticker?)

https://1drv.ms/v/s!AqVAQI7mbrQ51weiNYmUSr481II5


Sent from my iPod touch using Tapatalk
 
No it's a Quickie Q7 customized.


Sent from my iPod touch using Tapatalk
 
2 don't necessarily go hand and hand, but a story from when I was much younger, was in Special Ed because I have ADHD, knew a girl with crutches, she wore diapers (discovered quite by accident dropped something under the table and spotted them, know because I checked later, she didn't always wear though... anyway my point, for some its a mater of connivence, I think catherters have become more popular though
 
Well, I use a wheelchair, but I'm not permanently confined to it. I'm incontinent due to birth defects, but that's unrelated really to the spinal injuries I suffered at work. Mainly I find it hard to stand for long periods of time, or bend, or walk long distances. I can still walk though, just not very much, and I use the wheelchair for longer distances or when I'm going to need to be in one location for a long time.

I used to change myself, but the lack of being able to bend makes that very difficult for me, and so my wife does it primarily these days. I definitely echo the "wheelchair couple" bit, we've encountered that plenty ourselves, and the inability to do a lot of shopping has caused me many emotional breakdowns of late. One of the worst parts, for me anyway, is when you argue to get to go with, only to get there and find there aren't any electric carts, or the wheelchair won't fit, and even if either works out you deal with the stares, but you can't let yourself just stay out of it because it feels like admitting defeat.
 
These responses help a lot. Dogboy, yours was truly wonderful: both personal and very informative. It went to the heart of my problem here. I would like this protagonist to be unable to use her legs and incontinent, but I only have personal experience with the latter, and for the wheelchair-bound the entire world is a totally different place I have not ever experienced (and, Powers That Be willing, will not ever experience).

Gadget1982, it appears from your posts that you may most closely parallel the experience I'm looking for? Do you go into the world on your own without a caregiver? If so, we definitely need to talk.

Rennecfox, I'm pretty sure you're right about catheters, but my protagonist has her own reasons (not ABDL) for preferring diapers.

TheGnD, I suspect there are a lot of things you can teach me as well.

Thanks to all of you. For only being up a few hours, this post has already brought me a lot of help. I hope it brings even more as days go on.

Kerry
 
I use both diapers and straight Caths to manage my IC and retention and am in a wheelchair it's fairly common for us to use diapers either because of IC or functional IC , I am blessed with both. Sometimes I need help changing and my Aide will change me , if you want any kind of specific details or something shoot me a message and I'll be glad to help , IC and wheelchairs aren't to bad , you never have to make excuses why your ass looks fat (lol).and it's easy to see your a "broken toy" , everyone assumes everyone in a wheelchair uses diapers.

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Is there anyone who is IC in a wheelchair using diapers who does not​ have an aide while in public? One thing I'd like to know, if so, is how you manage on your own.
 
Gadget1982 said:
I am incontinent and also a wheelchair user. It happened from a head on car wreck back in 2006. I can walk vary little with the support of walls furniture etc. My right leg goes out at random so it's easier when out of the house to use my wheelchair. I am fully incontinent of both. I have what's called neurogenic bladder and bowel, another words I don't have control. They did offer me a Foley catheter and a colostomy bag but I didn't want the surgery nor more UTIs than I get already. At first I was uncomfortable about my diapers and changing in public but after talking to others on here I become accepting of myself and situation that wearing full time and changing in public doesn't bother me anymore.

Each person has different amounts of abilities and disabilities depending on where they were injured.

Feel free to personal message me for more information if you would like about my situation.

Here is my wheelchair: (can you spot the ABU sticker?)

https://1drv.ms/v/s!AqVAQI7mbrQ51weiNYmUSr481II5


Sent from my iPod touch using Tapatalk

That wheelchair is badass!
 
I do have an aide that does help me out at times when I need it and or want help with changing. I try to be as active and independent as I can be. There is times like others that it's hard to get around in stores due to placement of things. I am willing to answer questions and make suggestions on things for you if you want.

Thanks for the compliments on my chair. All the lights on there I did myself. I did it mostly for safety but also for fun.


Sent from my iPod touch using Tapatalk
 
Here is pics of my wheelchair so everyone can see what it looks like better.

28dc38ad171f018e9ffb43548a94753a.jpg


719111cf259f115f39fbce78288723b3.jpg


5c87508f22274897a5c853c2f4bb005a.jpg


345c91f63012184d6481dd7441eda3d6.jpg


e85d43540fcf92ecbc58cc04df74c686.jpg


Here is a better slow-mo video of my light set-up

https://1drv.ms/v/s!AqVAQI7mbrQ52F1-G94Ss5PU3Qub


Sent from my iPod touch using Tapatalk
 
Hi,

I am ic of bother bladder and bowel and I sometimes use a wheelchair and I sometimes walk with crutches. I use an aide to help me change in public. I can tell you about real life situations I deal with regularly, if you want.
 
CPDude said:
Hi,

I am ic of bother bladder and bowel and I sometimes use a wheelchair and I sometimes walk with crutches. I use an aide to help me change in public. I can tell you about real life situations I deal with regularly, if you want.

That would be helpful. Thanks.
 
Private message me then. I don't want to talk about those things publicly
 
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