Sudden Bout of Incontinence

Ken15

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I would appreciate any advice or input, re: the following.

All of a sudden, today, my PALS had 2 incidents of urinary incontinence where I was unable to get her to the bathroom before she let go.

As background, she is on riluzole, amytriptyline for sleeping through the night (since December) and started taking oxybutynin cl er (5mg) before bed for overactive bladder (early June). Up until now, the oxybutynin has significantly reduced the number of daytime bathroom trips, but today the veritable flood gates were opened. Can't think of any significant change that might have triggered this.

Also, she is in the 4th month of a clinical trial and she tries to stay hydrated due to the number of blood draws required (e.g., 5 in 1 day last week).

We're going back to the Mayo tomorrow for a follow up (and another blood draw) and will discuss with her doctor, but thought I would ping the veterans here for additional info.

Thanks,
Ken
 

Nikki J

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I expect they will check for a uti. Not everyone gets the classic burning etc. is she possibly a little ahead of the hydration game since she is preparing for Mayo tomorrow? Is it taking a tiny bit longer to transfer? Everything is the same otherwise meds, routines? Are her bowels ok? Sometimes fullness there can reduce capacity
 

KarenNWendyn

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My first thought also would be to rule out a UTI. Assuming no UTI, if she is post menopausal, sometimes vaginal estrogen cream can help.

I’m starting to have the same issue with urge incontinence if I don’t get to the bathroom on time. I can hold it normally until I’m upright. Then watch out! I know my pelvic floor muscles have weakened and I’ve lost my ability to Kegel. I’m assuming it’s from ALS because it’s really only been a few months. Quite embarrassing.
 

Ken15

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is she possibly a little ahead of the hydration game since she is preparing for Mayo tomorrow?
Good point - they had to put her on an IV last week due to trouble finding a good vein. She was somewhat embarrassed for not hydrating better and has been focused on hydrating for this coming visit.

I’m starting to have the same issue with urge incontinence if I don’t get to the bathroom on time.
Yes, Karen, it is more like urge incontinence - she is ok for awhile, but when she has to go, she can't hold it like she used to (yesterday).

I appreciate your comments.

Ken
 

KateEmerson

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Hi Ken, one outlier possibility is CO2 retention.

Strangely, high CO2 can also increase the frequency and urgency of peeing. Our very expierenced RT said excess CO2 goes into the blood stream, mixes with water in the blood and forms carbonic acid which the kidneys have to filter out which stimulates the bladder. Probably more info than needed but I've always been someone who asks how or why. I will say that before we knew my husband was going into respiritory failure he was distressed over having numerous episodes of an urgent need to pee at night.

The increased hydration or UTI is more probabable but with ALS it's always good to keep an eye on symptoms of increasing CO2. Kate
 

Narrowminded

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For what it’s worth, my DH lost the ability to hold his urine. It was all directly connnected to ALs and the weakened muscles. Then he ended up with urinary retention as they weakened further and needed an internal cath. Just another one of the joys of ALS. Hoping it’s not that yet and what the others have mentioned is the cause, but something to keep in mind.

Hugs
 

Ken15

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lisa g

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I am so glad this has been brought up. I thought I was going crazy. I am newly diagnosed (April) and am showing very little symptoms other than at times I walk stiff like I've been riding a horse. I always was able to hold my urine in fact my husband would always joke about it. Ever since starting Riluzole I'm finding when you feel the urge to urinate or have a bowel movement you get to the bathroom then and there there's no holding. I was wondering if this could be a side effect from the Riluzole?
 

KevinM

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I am so glad this has been brought up. I thought I was going crazy. I am newly diagnosed (April) and am showing very little symptoms other than at times I walk stiff like I've been riding a horse. I always was able to hold my urine in fact my husband would always joke about it. Ever since starting Riluzole I'm finding when you feel the urge to urinate or have a bowel movement you get to the bathroom then and there there's no holding. I was wondering if this could be a side effect from the Riluzole?
Hi Lisa. No, you definitely are not going crazy. We seem to be parallel tracking in a number of ways. When I met with my neurologist I mentioned some twitches/pulsing associated with the sphincter muscles and he said that while total incontinence is rare, there is usually some level of sphincter dysfunction with ALS, though resistance remains.

I, too have been experiencing the same issues. When the urge hits, beeline it to the toilet. This began occurring before I started on Riluzole last month, so I suspect it is not related to the drug. I could be wrong, though, and would love to have others weigh in. Kevin
 

KarenNWendyn

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Kevin, you’re correct. Anal sphincter can be affected by ALS but incontinence doesn’t generally result. I looked up reported adverse effects of Riluzole, and urinary (or fecal) incontinence is not listed among them.

Bladder emptying is a mixture of voluntary and involuntary muscles, and it stands to reason that ALS might affect some of the voluntary control. For ladies, be aware that this also changes with age, particularly after menopause.
 

Nikki J

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A brief hijack since Karen mentioned menopause. If you are not yet menopausal, ladies please do something to stop your periods and do it early. I am sure you can easily imagine the problems associated with weak hands that will eventually be unusable. Talk to your gyn. Ablation is often a good choice
 

Ken15

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We're going back to the Mayo tomorrow for a follow up (and another blood draw) and will discuss with her doctor,
Brief update: her ALS doctor referred her to urology and she has a consultation with a uro doctor tomorrow.

Ken
 

DFM20

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Kate,

Thank-you. How is CO2 retention diagnosed? Are there other symptoms?

Ken
Ken,
CO2 retention is measured by an arterial blood gas lab test, which can be a somewhat painful stick if not done with lidocaine. You can google symptoms hypercarbia or hypercapnia.
Dave
 

lgelb

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Typically, PALS are not getting ABGs done, since they are invasive, as you point out, Dave, and there is little point. There are handheld CO2 meters in some clinics, but symptoms and other history usually tell the tale. The action step for a high CO2 level is optimizing BiPAP settings (or getting it if you don't have it, unless you have opted out). And there is never any reason not to improve the settings, so you don't have to wait until any kind of formal statement about CO2 levels is made, to revisit respiratory support and sleep positioning.

If/when you have done absolutely everything possible with respiratory support and secretion management, then high CO2 would herald the end of life, but I don't think anyone on this thread is at that point.

Best,
Laurie
 

Ken15

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Post urology visit update: After an extremely thorough interview and examination, including a stress test, leak test (cystometry), blood test and microscopic urinalysis, the Mayo doctor said she had bacteria in the bladder, but otherwise no other significant issues. He doubled her oxybutynin dosage and once they typed the bacteria, would issue a prescription for an antibiotic. The 2 bouts of incontinence were likely stress incontinence due to her hydrating for the clinical trial blood draws. There have been no repeats since then. Follow up visit scheduled for 3rd week in August.

PALS was relieved to have a conclusive analysis/diagnosis. With all the uncertainty surrounding ALS progression, she/we didn't need the added issues of urological concerns.

As additional background, over the last 9 months, PALS saw 2 different local urologists (without positive results) and while each did some form of urine analysis, neither came remotely close to the comprehensive examination she received at the Mayo. I was present for all examinations and unless you experience it first-hand, I don't think you can really appreciate the qualitative difference.

Thanks, for your comments and input,
Ken
 
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