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I've had lifelong issues with my bladder, which I recently discovered… - No Pity: A Community for People with Disabilities [entries|archive|friends|userinfo]
No Pity: A Community for People with Disabilities

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[Nov. 10th, 2015|08:36 pm]
No Pity: A Community for People with Disabilities


I've had lifelong issues with my bladder, which I recently discovered can only hold 300ml if that. I've been toying w/ the idea of having a suprapubic catheter for a long time, & recently decided to go ahead with it. I can be fine, & then my bladder feels like velvet. I can be literally shaking & crying due to needing the bathroom so badly. I can't bear weight, so it would literally be easier for me to live on the toilet. I wear a pendant round my neck & prefer free-flowing clothing , but before staff get to me I've had epic leakage. Staff mostly do, are very kind (unlike the other facilities I stayed in) & have tried to persuade me NOT to have a catheter.

I know lots of people who do, who sit up straighter & generally look 10x happier than I do. I've tried everything, gigantic adult diapers, multiple adult diapers, meditation, restriction of fluid, bladder training ( both these were hellish, neither worked) If you ever read the story with the man who drank the entire sea, but was still thirsty, I could be his wife. I am often so dry my throat hurts.
:: any food, drink, clothing choices, I should avoid??
:: what if I sit on my bag & squash it??
:: will it hurt/feel like I'm wetting when it's done?

When finding supplies, I found I may be someone's dream woman

[User Picture]From: sammason
2015-11-10 09:34 pm (UTC)
Much empathy about pee urgency. It can pretty much rule your life can't it? Do you know what's causing it in your case?

My neuro (I have MS) tells me there are 2 meds she might prescribe. They operate in different ways that I barely understand. One is a tablet (I think) to reduce bladder sensitivity; the other is Botox injection to paralyse the bladder.

What I'm saying is, please talk to your doctor.

Also: do you eat enough salt? Excessive pee might be very dilute, coming from blood that's too dilute. There's so much healthcare advice saying, 'Cut down on salt,' but that's not always the best advice for everybody.
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[User Picture]From: sammason
2015-11-11 04:03 pm (UTC)
PS I forgot to mention self-catheterisation. Apparently when a nurse has taught you how, you can insert and remove your cath as convenient. It's easier for women than for men because our urethras are shorter. You could also choose a cath with a tap, sold under the catchphrase 'ready when you are'.

Do please tell us (or me directly) what you decide to do and how it works out.
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[User Picture]From: belle_marmotte
2015-11-12 04:46 am (UTC)
Just a thought but have you ever been tested for diabetes insipidus?
Before you go ahead with a cath option, I'd certainly want to eliminate that first.
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[User Picture]From: moontoad
2015-11-15 01:14 am (UTC)
Besides the other suggestions, I presume you've checked out meds for overactive bladder, right?
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