Bathroom Issues

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About 3 years after his PD diagnosis, Larry was ending up in the ER because of severe urinary retention, usually caused by severe constipation.   It was frightening for me, painful for him, and took hours.  His urologist finally recommended we get instructions on catheter use at home.  Turned out to be super simple, and a pretty funny story with the nurse being a young and beautiful female and the instructions being “hands on” and not just a pamphlet to read.  At first it was once in a while emergency use.  Then it became more frequent.  Now it is the only way he can urinate.

Intermittent Sterile Catheters:  What they don’t tell you

Medicare pays for the catheters.  They are pre-packaged sterile one time use only gender specific straight catheters.  We order them from the company that supplied the samples and they arrive every month by mail.  There are different kinds, styles of lubrication, and diameters and lengths. They are measured in diameter in something called FR(French) units.

We took what they suggested – a prelubricated straight catheter that came coated in some sort of a gel in the packaging.  It worked fine for awhile.  But then it seemed harder and harder to insert.  The urologist suggested it was from the muscles being in such tight spasm.   Luckily he has no prostate problems – because an enlarged prostate can be tricky to get the catheter around.

But I found some sites on Google that talked about different kinds of catheters and some said that the prelubricated kind may contribute to damage to the internal tissues and something called strictures that can make insertion difficult after long term daily use.   There is another type called hydrophilic because it has a polymer coating that binds with sterile or saline water and becomes (and stays) very slick slippery reducing friction on both insertion and removal.  The reduced friction makes internal tiny tears and strictures less likely.  Clinical evidence also seems to shower less incidence of infection.    We ordered the new ones and lo and behold, we haven’t had any problems since then.

I will say they are a little messier.  They come with a foil packet along with the catheter in the package. You break the packet by pressing on it while the package is still sealed and then you let the water surround the catheter.  Once you open the package there is always a little extra water that does tend to drip on the floor if you aren’t careful.  I just open it over a trash can lined with a plastic bag that we keep next to the toilet.

However, we’ve had NO insertion problems and NO infections.

We use them about anywhere from 3-6 times a day but mostly about 4 times.

We also got some travel catheters that are convenient to keep in my purse, or now he keeps them in his wheelchair pouch.  They are since use sterile pre-lubricated with gel with sections that slide out from each other to expand to full length.

We also tried some extra long catheters to see if we could find a way for him to use them from his wheelchair but that wasn’t a successful experiment.

We use the catheter with him standing.  There’s a grab bar on the wall and I place a simple metal walker across the toilet to give him something to hold to balance with on both sides.  He needs me to do the insertion and removal because he doesn’t have the balance to stand up without holding on with bars with both hands.  He doesn’t experience any pain or discomfort (and neither do I.)

UPDATE:  We now only use the catheter with him sitting in his wheelchair or lying in bed.  He doesn’t have the strength to stand.  One tip I’ve found is that when the flow slows and he’s lying in the adjustable bed, if I raise the head so he’s sitting more upright, the flow increases.

The urologist suggested I just wash my hands with regular soap and water – not antibacterial.  And to just use water to clean off the end of the penis if it needs it – not alcohol or anti-bacterial soap.  He said too much sterility can actually make the system more prone to infection.  Knock on wood, it seems to be working.

Cleaning Up the Butt:

Sometimes the pain and rigidigy in his back  along with the weakness of his legs can make it difficult for him to clean himself.  Then I have to help.  Talk about an “ick” factor.  I’ve gotten used to the catheter so it’s no big deal but this end is more distasteful.  I didn’t like changing baby diapers either but the baby bottom is a lot smaller than that of a grown male.

UPDATE:  Now I do this all the time.  The swings from constipation to loose stool have increased in frequency, and he sometimes has bowel incontinence.  We used Depends and he wears them backward because he has no urinary incontinence so the larger padding is now in the back.

To make clean up easier we have installed a toilet bidet.  It’s great!  We actually have a free-standing bidet in our bathroom that came with the house, but don’t use it because it is very low to the ground and would require another transfer.  This toilet bidet is a new gadget – a Toto Washlet 200 – we ordered from Amazon.  We were lucky because it fit directly on our existing toilet in place of the old seat.  You can get all the necessary measurements online to check it against your toilet dimensions.  The water comes from the toilet water line.  You do need an electric outlet near the toilet.  My son put it in for us – said it was pretty simple.  He’s a grad student, not a DIY homeowner.

It functions much like a regular bidet – it’s a shower for your butt!  This model has a remote control, you can heat the seat and heat the water, and it has a heated dry function as well.  You can control the temperature and the location of all.    It doesn’t do everything but it certainly makes clean up a lot easier.  And rubber gloves lessen the “ick” factor.  As does laughing about it, because… well it sure isn’t what either of us would have planned.  It definitely doesn’t qualify as foreplay!!!

CONSTIPATION:  We’ve tried everything and the only thing that has helped is a daily dose of Amitiza plus a daily tablespoon of Benefiber.  Amitiza is a relatively new (and expensive) med but these new meds are particularly helpful with the reasons for constipation that MSA causes which is different than what the average population has problems with.  See this great video for more information about lots of symptoms but particularly great information about constipation and urinary problems:

MSA Conference Panel Discussion Video