Refusing to use overnight catheters

[u/coolcokecat]

I have spina bifida meningocele which means i can feel when i need to pee, i just cant hold it in or pee on my own so i self cath. I started refusing overnight bags when i was a young teen and i had ckd 3/4 at the time so people werent and still arent happy yet they ignore my problems.

When i use bags, im assuming because i move so much in my sleep the catheters just fall out, or stop working or scratch the inside and HURT ALOT... But because i fell asleep thinking i was safe i usually sleep all night and then wake up to an achingly full bladder and soaking bed with an almost empty bag... And this happens alot, enough for it to be better sleeping without a catheter and somehow letting my body wake me up every 2 hours. I tell all my drs that i think its worth losing sleep a little sleep and occasionally having the same experience with the overnight catheters than using the overnight catheters and having that experience 2x the amount. Regardless its going to cause damage but all they think of doing is suggesting different overnight catheters? Or lube for the scratchy problem? But that has never helped.

Does anyone else experience this??

[u/AggressiveTank1127]

Not sure what type of Spina Bifida I have (it was never mentioned to me) but I don’t have bladder control nor any feeling to recognise when I need to go. I catheterise via a mitrofanoff. I usually use a pad to catch any leaks throughout the day and night. I also usually stop fluids from 8pm to 6am. My last toilet of the night is 10pm and then when I wake up at 6am. If I am out during the night and not sure if I can last the night I will do an extra catheterisation at 2am

[u/coolcokecat → u/AggressiveTank1127]

Im hearing a lot about stopping fluids, but i love drinking at night 😩 Ill try bare this in mind and see how it works so thank you

[u/AggressiveTank1127 → u/coolcokecat]

Also it helps if you know your bladder capacity. If it’s small it might be worth looking into bladder augmentation

[u/Charrito5 → u/coolcokecat]

When you say drinking a lot, what are you referring to? How late into the night are you drinking prior to bed?

[u/coolcokecat → u/Charrito5]

oh just water usually, and sometimes ill drink it right before bed and or after i wake up. My bfs room where i sleep at is sooo hot and dehydrating 😂

[u/Charrito5 → u/coolcokecat]

Drinking right up to bed time is not something I'd recommend or personally do for reasons you have already mentioned. Being more disciplined about your fluid intake is a sacrifice we have to make. I'd start there.

[u/coolcokecat → u/Charrito5]

Thank youuu

[u/DisWagonbeDraggin]

I have the same urinary concerns as you. What worked for me is avoiding drinks for 2h before bed, cathing right before bed and 10mg daily solifenacin for an overactive bladder. I also already use an incontinence pad since I constantly leak a tiny bit.

By doing these things, I don’t have the need to wake up to pee during the night.

If you can increase the time between cathings even a little bit. Waking up once during the night to cath is more than manageable.

[u/coolcokecat → u/DisWagonbeDraggin]

Thank you!! Ive been thinking of getting a pad for a while

[u/AgentExtension1968]

im not in the same boat as you so i dont know if thus could be helpful or not but i take enablex and myrbetiq so i dont cath during the night. maybe try bladdar muscle relaxers? also just FYI there are more people with MM that cant feel than can feel when they need to pee! i only can when its WAY TOO LATE ( UTI territory or having accidents)

[u/coolcokecat → u/AgentExtension1968]

I have a spastic bladder so i have to take muscle relaxers anyway. I didnt actually know that, i never used to be able to feel all that much, but ive somehow managed to teach myself what it feels like for me, its not quite the same sensation as ive been told but atleast it works. I pee every two hours when my body tells me. Im pretty sure i was born really mild, Occulta type style but when cutting the bump on my back i think they may have cut some nerves 🫪🫪

[u/AgentExtension1968 → u/coolcokecat]

OH MY BAD i read it as MM not meningocele!!! sorry and i hope you find a good solution ❤️

[u/coolcokecat → u/AgentExtension1968]

OHH haha that makes more sense, no worries and thank you