Urination and independence

[nona]

hi pALS, do any of you have experience with the subrapubic catheter ( for women)? I am not incontinent but I do have to urinate frequently, especially after tube feedings. I am having more difficulty with transferring myself as well as PWC control, but it seems crazy to have someone here just to help me transfer every hour or so. I cherish what little alone time I have. Maybe that's the wrong reason to consider something like a catheter, but exploring options is part of the path towards acceptance. I welcome your feedback. thanks

 

[Nikki J]

I don’t have experience but it is on my list of things I would consider. I don’t think it is a wrong reason. IIRC one of our members did have serious complications from the surgery but that is not the usual outcome ( obviously or no one would do it). Of course you will research the surgeon and facility if you pursue this.

 

[KarenNWendyn]

I don’t have personal experience but can comment as a physician who has seen a number of patients with these catheters. Urinary tract infections are definitely an increased risk and are a pain to treat and control. Chronic bacterial colonization of the catheter is fairly common but doesn’t necessarily lead to UTI. This is from an online medical textbook UpToDate: Bacteriuria (bacteria in the urine) in patients with indwelling bladder catheters occurs at a rate of approximately 3 to 10 percent per day of catheterization. Of those with bacteriuria, 10 to 25 percent develop symptoms of urinary tract infection (UTI). Female gender carries a greater risk for UTI as does diabetes and immunosuppression. I’m not sure about immobility.

Organisms that cause catheter-associated UTI and asymptomatic bacteriuria are increasingly resistant to antimicrobial agents.

Important complications of catheter-associated urinary tract infections (UTIs) include sepsis, bacteremia, and involvement of the upper urinary tract (I.e kidneys and ureters). These complications carry an increased risk of mortality related to the complication.

The trade off is obviously convenience, and I’m sure plenty of people with suprapubic catheters do just fine. Obviously, catheter care is paramount.

So just be aware of the UTI risk if you decide to do this. If you have other risk factors such as diabetes, immunosuppression, kidney stones, prior history of frequent UTIs, then you may want to reconsider.

 

[Nikki J]

I agree there are issues to be considered but if one is managing alone this is a little more of an issue than convenience.

Nona if you will could you share on a thread how you are managing? I think we could learn from you. Thanks!

 

[nona]

I would be happy to do that. Do you mean on this thread or somewhere else?

 

[Nikki J]

I thought a separate thread as I think it is an important topic. Thanks

 

[nona]

Update : I just had a Foley catheter inserted. We'll see how it goes! It's just in time, because this week I discovered that while I can still transfer myself onto the toilet, I can't safely get back to my chair. The catheter means I don't have to get up, though I'll have to retrain my brain from planning bathroom breaks.

 

[Kristina1]

that's great nona, I'd definitely like to follow how you're managing it. I have a small bladder and need to get up and go pee very often. I can make it to the bathroom with my walker independently, but can't pull my pants up and down so we bought a pair 2 sizes too large that I can manage! I too value whatever unattended time I can hold onto for as long as I can, so I would consider a catheter in the future at some point.

speaking of convenience and independence-- I just got home from the hospital an hour ago. I had my ablation surgery/procedure this morning to stop my periods!

 

[nona]

that's great nona, I'd definitely like to follow how you're managing it. I have a small bladder and need to get up and go pee very often. I can make it to the bathroom with my walker independently, but can't pull my pants up and down so we bought a pair 2 sizes too large that I can manage! I too value whatever unattended time I can hold onto for as long as I can, so I would consider a catheter in the future at some point.

speaking of convenience and independence-- I just got home from the hospital an hour ago. I had my ablation surgery/procedure this morning to stop my periods!

I went through the pants problem too. First I switched to shortish skirts because it was easier to lift up than pull down. When lifting became difficult, I cut my skirts up the back and then pulled it apart to sit. But the skirt solution works best commando, and the split skirt might be too revealing for walking but is unnoticeable when seated.

I have a Morena IUD and that virtually stopped my periods.

 

[ChristineRK]

hi pALS, do any of you have experience with the subrapubic catheter ( for women)? I am not incontinent but I do have to urinate frequently, especially after tube feedings. I am having more difficulty with transferring myself as well as PWC control, but it seems crazy to have someone here just to help me transfer every hour or so. I cherish what little alone time I have. Maybe that's the wrong reason to consider something like a catheter, but exploring options is part of the path towards acceptance. I welcome your feedback. thanks

Hello, Nona!

I actually had a supra-pubic catheter put in and it was the best decision I have ever made. Yes, where they place it, made me feel a little less feminine - but for certain 'occasions', you can kind of roll it up and put a large Tegaderm bandage over it. You cannot go swimming, or take baths as this area is sterile and needs to be kept clean and dry and you don't want any type of pool/ocean/bath water to go into your surgical opening. But again, if you are going on vacation, you can roll it up, and make certain that it is completely covered with a Tegaderm bandage. (ask your urologist about this). I go in every 4 weeks to have my tube changed and they take a look at every thing to make sure all is well. The appointment takes maybe 5 minutes. But really - I found it to be wonderful. I actually have a large 'night bag' on right now as I am writing this e-mail and know I won't have to ask for help to the restroom for hours.

My problem was that my bladder wasn't contracting and I wasn't voiding as much as I should have been and it ended up filling up the tissues in my body. I knew something was wrong, but I didn't know there was such a thing! I was in the hospital for something else, when a doctor lifted up my sheet and said 'lets cath her' - almost immediately 1200 mls came flowing out. And more and more over my hospital stay. Before I left my urologist came in and discussed options with me. I would not even bother with the catheter that actually goes in your urethra. Sometimes it is har to go in and only lasts as long as you have it in (which is not long). When you have the suprapubic catheter, you can use a large bag at night and then there is a smaller bag that you can wear under your clothes and attach to your leg. (or a combination thereof).

Like I said - I didn't even know such a thing existed and I'm SOOOOOOOOOOOOOO glad I did it. You are put under for the surgery but you go home the same day.

Don't be afraid to ask your doctor as many questions as you can think of - but I am SOOOOOOO glad I did it! If you have any other questions for me - feel free to ask as many as you want!

Take care!
~Christine

 

[affected]

I feel that long-term the supra-pubic is a better option - so glad yours is giving you such a great experience Christine

 

[ChristineRK]

Thank you, Tillie -
I didn't think I'd like it - but it's amazingly freeing. No 'bothering' anyone and no accidents. (just a recommendation, purchase those tiny square alcohol pads, because you want to keep the 'stopper' that goes in the end when you take the bag off, sterile. I think you can get 100-200 for under $3.00.)

 

[Atsugi]

It might be informational for male PALS if someone smart can explain why my experience with a catheter was so exceptionally painful.

After my urologist removed my prostate (apparently with a wrench and a butter knife), somebody inserted a catheter into my urethra. I expected a few days of Tylenol-level pain, but what I got (a couple of times daily) was fall-on-the-fall screaming agony.

I tried taping the tube into various positions, especially to make sure my pants and that bag full'o'piss didn't pull on the penis. Any movement at all was painful.

Is this normal?

(Thankfully, Willie is free now.)

 

[Ken15]

Not a PALS, but in 2016 had a UTI and couldn't pass any urine due to enlarged prostate (BPH), so they inserted a Foley catheter for 2.5 weeks until they could do a TURP. The catheter was a godsend compared to the alternative .

No pain that I can recall. However, when they suggested I could self-catheterize, I said "Oh, no thank-you!".

Ken

 

[ChristineRK]

Ken (and Mike),
Thank you for that - 'Oh, no thank you!' has me cracking up! I needed that! (Sorry, fellas - I know it's not a funny subject!)

Hey, Mike! I'm a female, so I can't quite relate to your issues; but prior to them surgically implanting my suprapubic catheter, I had to try to self cath through the urethra. (I think that was to get the surgery approved). Definitely not a picnic and it didn't work - so, luckily I got the suprapubic catheter.

The only thing I can think of is that I see commercials from time to time where a gentleman was given a 'trial box' of several different catheters and he kept trying them until he found one he liked? Is that a possibility?

I wish you the best!
~Christine