Oh heck wavewolf,that must be so very difficult dealing with just a 100ml capacity, its so little. Are you intermittently catheterizing because that would be tiring?
Your very welcome: re the post
I am not cathing, but have to use neuro trick to start stream. I have to empty every hour now, much anxiety over this and makes my life revolve around potty access. It also worries me for when I am in nursing care, because they do not come to care for you even every two hours (standard for incontinence care). Wouldn't take long for skin breakdown.
wavewolf, I thought my 200ml capacity was small! That would make sense why you'd have to urinate frequently. Also, what do you mean by you'll lose your bladder?
The walls of my bladder are weakened by sarcoid lesions, and diverticuli (pockets) have formed. My bladder walls look as if they have been shredded with a julienne tool (cooking utensil). If there is a tear and urine is leaking out internally, then infection would be huge risk. So, I will have another cystoscopy done to monitor condition of walls. If the bladder is removed (cystectomy), then a stoma is created to carry urine out through your side, where it is more easily cared for than at end of urethra. A holding place can be created from part of intestine. Sounds major to me, so hoping this will not be necessary soon.
Did your doctors suggest a reason for why your bladder is/got so small? My doctors did not have an answer for that question, but called it atrophy. So I am guessing it is a by-product of paralysis.
Wow wavewolf, that really does sound intense! I hope you won't have to do that anytime soon either.
I don't know if my urologist ever told me why my bladder capacity was small but I have an overactive bladder meaning once my bladder fills to about 300ml it starts to spasm like crazy and my bladder sphincter will randomly open and close until the bladder relaxes which is when it self empties about 100ml. I always retain 150-200ml which is why I cath twice a day. Now that the summer is here I'm going to try cathing every 3 hours and hopefully will not need to use to condom catheter during the day.
Wow wavewolf, that really does sound intense! I hope you won't have to do that anytime soon either.
I don't know if my urologist ever told me why my bladder capacity was small but I have an overactive bladder meaning once my bladder fills to about 300ml it starts to spasm like crazy and my bladder sphincter will randomly open and close until the bladder relaxes which is when it self empties about 100ml. I always retain 150-200ml which is why I cath twice a day. Now that the summer is here I'm going to try cathing every 3 hours and hopefully will not need to use to condom catheter during the day.
Too intense for me! Glad to hear you are going to try more frequent cathing. Drink plenty then, because you will be able to control output.
I have hydronephrosis in the right kidney because the urinary retention was missed. The urologist said it will resolve with timely and effective cathing. Also on ultrasound it showed the detrucer (bladder) muscle was atrophied because the nerves are damaged.
I have hydronephrosis in the right kidney because the urinary retention was missed. The urologist said it will resolve with timely and effective cathing. Also on ultrasound it showed the detrucer (bladder) muscle was atrophied because the nerves are damaged.
Yikes, hopefully that'll resolve itself soon! I'm most worried about kidney problems. That'd be the worst thing that could happen on top of everything else we deal with. I have to go get a kidney scan soon. Hopefully it looks good!
i can pee on my own but it's dribbly stop and start. But then I will have episodes of painless retention and overflow incontinence. It's this that my urologist said to avoid because when the bladder reaches max and I'm not aware then it reflexes back into the kidneys. I'm saying all this because I wonder if anyone else has the same pattern. So my urologist said it's best if I stick to a tight schedule (every 4-6hrs) since I don't know when my bladder is holding its max, which seems to be 550ml. I've had and extra 400ml after peeing on my own, This has all made me not drink enough, but that isn't good for your kidneys!!!
Hey DJ, good luck with your appointment. Don't worry! I am hoping for you????????, that the scan will be ok!!!!????
i can pee on my own but it's dribbly stop and start. But then I will have episodes of painless retention and overflow incontinence. It's this that my urologist said to avoid because when the bladder reaches max and I'm not aware then it reflexes back into the kidneys. I'm saying all this because I wonder if anyone else has the same pattern. So my urologist said it's best if I stick to a tight schedule (every 4-6hrs) since I don't know when my bladder is holding its max, which seems to be 550ml. I've had and extra 400ml after peeing on my own, This has all made me not drink enough, but that isn't good for your kidneys!!!
Hey DJ, good luck with your appointment. Don't worry! I am hoping for you????????, that the scan will be ok!!!!????
Post by fishkybizniz on Apr 10, 2016 22:00:57 GMT -8
I'm getting a work up on my kidneys. Didn't see mention here of how often our group of Nerogenic bladders get infections? I get infection every 3 months. They're nasty,taking 2, sometimes 3 weeks of antibiotics to go away. Last year adrenal insufficiency was added to my rap sheet. Since, my bladder infections push me into adrenal crisis. When I take extra Dexamethasone, I can't sleep. And so la-dee da da da later I'm reaching out to another urologist (part of a sizable urology group) to see if we can stop the cycle. This is crazy, I could die over a stupid bladder infection. ???
Hi fishkybizniz, If you search Urinary tract infections and also bladder infections, you will find lots of posts covering commonly related discussions. I think that the amount of infections depends on the individual, it is so different for one person compared to another.
Unfortunately, its an occupational hazard that comes with SCI but a potentially highly risk one. Management is the way to reduce infections but sometimes, no matter how much we try, we get bladder infections, unfortunately.
I'm getting a work up on my kidneys. Didn't see mention here of how often our group of Nerogenic bladders get infections? I get infection every 3 months. They're nasty,taking 2, sometimes 3 weeks of antibiotics to go away. Last year adrenal insufficiency was added to my rap sheet. Since, my bladder infections push me into adrenal crisis. When I take extra Dexamethasone, I can't sleep. And so la-dee da da da later I'm reaching out to another urologist (part of a sizable urology group) to see if we can stop the cycle. This is crazy, I could die over a stupid bladder infection. ???
Yeah I get infections like that too fishkybizniz. It was once a month in the past but it has improved. It's pretty crazy how serious these infections can get and how life threatening they can be if not treated in time & appropriately. I've been doing 1 week antibiotics and have been doing fine with that but it's still too much. You just gotta keep drinking water and making sure to empty out your bladder completely!
I had SCI in January lost sensation of needing to void, I was allowed catheters four times a day and voided 1500 cc plus per time, ( staff told me to ensure I was drinking lots which I did) continued this for two months and finally had an Ultrasound done which revealed that I had severely swollen kidneys. Still waiting on results from Ultrasound to find out extend of damage to kidneys. Not very happy that I was not advised of Badder capacity and given proper instructions on how often to void or how much to aim for each time still don't know what this should be does anyone out there know?