ALS - effects on ability to urinate

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KarstBoy

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Joined
Apr 10, 2021
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71
Reason
CALS
Diagnosis
04/2021
Country
US
Over the weekend while using a Purewick, my wife suddenly couldn't urinate. I thought it might have been something mechanical with the Purewick setup but I could find nothing wrong. Then suddenly, urine started flowing again. It lasted for a second or two and shut down as if someone had turned a switch. After reading about this problem on the internet, I figured it was possibly a urinary tract infection. Regardless of what it was, my wife's bladder was hurting so I wound up having to take her to the emergency room at 2am. They tested for a UTI and found nothing. To get things going, they had to insert a catheter. We were told to leave it in for a week or two.

Today while researching the problem further, I found NIH medical articles that mentioned that ALS can mess with bowel and urinary systems!

Has anyone ever had a problem like this? If so did it go away on its own?
 
ALS can cause either hesitancy or urgency, for either system, because when muscles weaken they can get floppy, spasmodic, and so on. Being consistent about her hydration may help. Did they do an ultrasound to check for stones?
 
ALS can cause either hesitancy or urgency, for either system, because when muscles weaken they can get floppy, spasmodic, and so on. Being consistent about her hydration may help. Did they do an ultrasound to check for stones?

Haven't been to doctor for it yet out side of the ER doc. We've got an appointment next week with a urologist to try and find the cause of the problem. Since there was no pain involved, probably unlikely that it has anything to do with kidney stones.
 
I will add my issues from experience that ALS has definitely affected my bathroom needs. I had worked as a letter carrier for 30 years and never had an issue holding it until I came upon a bathroom. Now, since being diagnosed that luxury has ceased to exist. Now I find when I feel the urge I better get to a bathroom to avoid any accidents..
 
Same here, Lisa. worse in the morning for me, especially with my GI issues. Once I’m cleaned out, though, I’m usually okay and still have enough sphincter control.

I’m very lucky in that I’m still mobile so I can get to a toilet before an accident. It’s happened a couple of times though (once out on a walk) and it really depresses me in addition to the embarrassing mess.
 
I hear you Kevin, makes me wish I could still run if I needed to alas those days are gone.
 
I have urgency, both pee and poo. I just hate it when I settle for the night only to take another trip to the loo. I'm usually okay once I wake up for the day as long as I've had time to do my business. I'm still walking but nearly break into a jog when I feel it coming on.
 
I am umn dominant and have severe urinary urgency. I hate to admit it but it was so bad the other day I peed all over myself. After this happening, I am much more careful to be near my bathroom after drinking fluids. This sucks because I drink tons of water all day as it makes me feel better when very hydrated I am okay with bowels but urination is a big problem. I guess you must just be as careful as possible.
 
Jman37, I too am UMN dominate and also feel severe urinary urgency. I just make as soon as the urge comes over me I get to the bathroom quick to avoid accidents.
 
Mainly for men but get checked out by a urologist. Fred, my housemate, had such bad urinary urgency, he peed his pants several times. It got to a point where I ordered adult depends so he could go to a concert an hour away without worrying.

He had an infection in his prostate. He was on antibiotics for several months. It's much better now but he still has urgency every now and then. They ruled out prostate cancer and a bunch of kidney issues.

Just so you know it's not always ALS that causes everything. It does seem to make minor things much worse, sadly.
 
I will join the chorus. I too am UMN dominant and experience frequent urinary urgency. Now that I am in a wheelchair I can get to the toilet much quicker than with the walker, but after a few embarrassing accidents my plan is this: If I have two tasks at hand, and one of them is to go pee, that always gets priority!
 
My PALS learn a Depends (so he doesn't have to hurry to the loo) during the day and we keep a urinal in the car for emergencies. At night he uses a condom catheter (cc). I wish I had known about the cc sooner, as he has had night time urgency for many years. I see the time coming when he won't be able to transfer to the toilet at all......what then?
 
If you're talking about bowel movements, PALS can hover over the toilet in a lift in a divided leg aka U sling. or hover over a bedside commode/bucket.
 
I also have a urgency to pee. When it first started to happen I had several accidents on myself trying to get to the bathroom. Now when I first feel the urge to go, I stop what I'm doing and go to the bathroom. I also keep a hand held portable urinal by my bed and one in my living room just in case. I'm in a wheelchair but able to get up close to the toilet and transfer from the wheelchair to the toilet
 
Has anyone had the opposite happen?... the sudden INABILITY to pee??
 
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