Can't get off the toilet independently-what now?

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Hello everyone!
i started reading this article and I was yelling (inside of course!) ‘look at my post on my Suprapubic catheter!’ Well I’m there one who has it - and I love, love, love it! I drink fluids any time of the day which, I feel, is essential. If you can move your hands and arms you can do it yourself OR your caregiver/family member/volunteer can come over once or twice or 3xs a day ( for like 5 minutes) to empty your bag and dump it out. Or if you are having someone come do do other things, this very fast procedure can just be added on to their list with no problems. Keep in mind, I’m a very modest person, and this allows me to have great modesty as well.

So, you need to go thru (I’m a female, btw, so I’m not certain how different it would be for males, but I imagine it would be close to the same thing) a very minor surgery (about 30 minutes - and you’re put completely out, so have that in mind) where a rubber tube is put directly into your bladder (so that’s in the front of you right above the pelvic bone).

Now, you can leave it with no attachments but just empty it every so often by unplugging the end and have someplace (probably a male urine ‘catcher’) and you would empty it in there. My preference is to hook up one of those large urine bags they use at the hospital so that I can see exactly how much output I have and what color it is (therefore knowing how much more I need to drink, or if I’m right on track if the color is good, etc.). It also is able to hold 2000mls before you need to change it. I still drink thru the night here and there for the dryness- but I never have to worry about holding it, making it to a toilet on time, etc. it literally lasts me all night -easily.

I hang the bag at the end of my bed, lower than my bladder and it drains on its own and I never feel the urgency to go number one as my bladder is automatically emptying into my bag whenever there is something in it. There are other types/of sizes that go between ‘no bag’ and the large one. They are smaller, and can strap to your leg if you are able to walk and you want to be free of the large bag and longer tube here and there. I prefer to try to use the larger one as much as I can. The ‘strap on the leg one’ I find is more noticeable under the pants and seems to fill pretty fast. Also, if you are wheelchair bound you can get a satchel for the side of your wheel chair to put your bag in and no one will know it’s there but you. (A urologist did the procedure for me after being referred to by one of my caregivers at the clinic.).

It’s not the most attractive thing for us ladies as we have a tube now sticking out our fronts - but the trade off is a ‘no brainier!’ If I knew how to send you all pictures of it on me (I’m in bed, and as I said I have the large bag on me at all times) - I would post a couple of pictures for you. But I would imagine you could google it. Now you do need to have the tube that is coming out of you replaced every 4 weeks to prevent infection.

You can either go their office (if there are no travel/mobility issues) or I wd imagine a urinary nurse could come to your home to do it. The urologist himself/herself doesn’t change the tube, a trained uro nurse does it. It literally takes 5 minutes and does not hurt at all. Sorry if I rambled ( for some reason I have a tendency to do this lately and it’s also a hard thing to describe.). Oh! If I should have something where I don’t wear the tube and whichever bag for some reason, I put a Tenna pad on, to catch my leaks before I can make it into the bathroom. It’s almost inevitable that I will leak when I don’t have one on, so this catches what I can’t.

I also watch the amount I drink on these occasions. Also, if I have a bag on I NEVER need a pad/diaper because it all goes down my tube and right into the bag. As I approach the 2000 mark, either I or someone else empties my bag (there is a flip switch at the bottom of the bag) that can be emptied into a male urine container (or any type of container for that matter) and disposed of down the toilet. There is zero pain involved! Best move on my part ever!!

I have electrolite drinks to make sure my electrolytes are ok and flavored waters (I can’t stand plain water) the rest of the way and do it to my hearts content. I believe that hydration is very important. I actually start to get chapped lips when I haven’t been drinking enough. If you have a feeding tube, this also lets you freely run just water thru it if you are too tired to drink. I do this when I have periods, days of exhaustion.
Please ask me any questions you have - or run to your ALS group telling them you want this procedure!

Thinking of you all, my friends!
(The bravest people I know!)

-Christine
 
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Christine, thank you so much for all this Information. I knew there was someone out there who was happy with the Supra public catheter solution, but couldn’t remember where I had read it. I’m a tech moron, so finding older stuff on here is a challenge for me.
You make it sound pretty easy and quick, and the fact that that it eliminates both the urgency type accidents and those days when you just leak every time you move, that would be huge. I’m also trying to minimize how much help I need, firstly because my husband is wearing out, but also, once I am allowed to move into the assisted living, the cost goes up significantly with how much assistance you need. And the modesty issue is an important one for me too. Helping get a female urinal in the right place is pretty intimate, in all the wrong ways. And getting diapers on is getting difficult, even with help. My dear husband ended up helping recently and by the end I had a big twist in the crotch area, uncomfortable And leaky.
Thank you thank you for sharing this.
Dorothy
 
I also have a suprapubic catheter and am happy with it. I only use the 2000 ml bag. At night is sits beside my bed in a little trash can and during the day it’s in a bag hanging from the side of my wheelchair. It only needs emptying twice a day so my caregivers come twice to help with that and other needs. The tube into your belly needs changing once a month so I’m set up with a home nurse thru Medicare to do that which means I’m on a permanent “episode “ and get a few extra hours of home Heath care each week for baths and what-not. All of my therapists can do home visits too through the Medicare episode. I’m 100% hoyer. I take a half dose of Miralax each morning and so have bms trained for about 10 most mornings while my aide is here. Restricting liquid intake too much is a bad idea.
 
Thank you, Vltsra! I have been thinking about Depends. I appreciate a caregiver's input-so much more experienced than we are at this stage with 2 1/2 years in.
 
Thank you Christine! I do recall your comments now that I think about it. I appreciate the details of your post-so helpful for many here! :)
(Waving hellp from Massillon-not too far away! My husband is from Westlake)
 
I very much agree that you don't want to restrict fluids, either in amount or by time.
 
Hi Dorothy!

I’m sorry I took so long to respond – but I’ve been off the site for a little bit.

I’m glad you like the idea of the supra pubic catheter! It really saves me time, the urgency issue is eliminated, and the integrity of my modesty is maintained.

If you have it done and can think about it, let me know how it goes!

You are a WARRIOR!!

-Christine ❤️
 
Well, HELLO, NEIGHBOR!!!

I’m glad my post helped! It’s funny, because when I read the posts in the threads I go in - I know yours are always going to be helpful, insightful and reliable.

It’s nice to know that I have a knowledgeable neighbor out there!

ALL my best,

-Christine 😊
 
Thanks again Christine, the information from both you and Doglady has made me feel very hopeful that the supra pubic catheter would be a big quality-of-life improver for me. I have talked to both my primary and a urologist about it. They are less than enthusiastic about it, because of the risk of infection. They have me on a course of oxybutynin to help with the incontinence. It does seem to help a bit, but I’m still needing diapers 24/7, and I still don’t drink as much as I should because using the urinal is a pain.

Tomorrow I have an appointment to get things started towards a feeding tube. I would think the risk of infection would be similar, and if one risky tube is ok, why not two?

I have another question for you both, that only occurred to me today. I am a belly sleeper, and wonder if these tubes are going to make that impossible. I can’t imagine trying to sleep on my back, and hope these tubes can be secured well enough to allow for sleeping belly down. Please let me know what you think about that.

Thanks very much!
Dorothy
 
The risk of infection for a suprapubic catheter once in will be higher than that of a feeding tube as the bladder will be more susceptible. Traditionally people have said the bladder is sterile. New research says it probably isn’t but the stomach is designed to handle all kinds of things without filtration and minimal processing. That said, a suprapubic catheter is something I plan to explore too
 
Nikki and Dorothy-
yes, the risk of infection is real. I’ve had a few but none lately. I chose the Supra pubic catheter because I couldn’t hold my urine more than 2 hours and with diminishing ability to transfer myself I couldn’t imagine either getting help to go that often or wearing a depends 24/7. My doctors all discouraged me but agreed I was “functionally incontinent” and that I could have it. Even while having an infection I never regretted it. The freedom and convenience is always worth it to me.

Dorothy- for a month after the surgery my incision point for the tube was very painful. So, I’m sure you wouldn’t want to sleep on your stomach. After your wound has fully healed I don’t think it would bother you to sleep on your stomach.

There have been some lessons I needed to learn to make it work but after 6 months I think I have it under control! I’ve had bladder spasms, by-pass urination, infections, and a blocked tube from sediment. Getting the tube set up to drain without backing up was slow. Figuring out how to manage the bag in my wheelchair or recliner took some trial and error. It seems that my tube needs changing every 3 weeks instead of the normal 4 weeks and we now flush the tube daily.

After I got my catheter they set me up with Medicare for home nurse visits. They get the urine specimen (to check for an infection) and change my tube at home. This means I’m allowed to have at home OT, Speech, PT and health care aide visits. The Medicare episodes will be renewed perpetually because of the tube change requirement. Most of the supplies are covered by Medicare too. The nurse has been wonderful!

Sorry this has been so long but I think you’ll be happier with whatever you decide if you know what’s involved. If I had kept the ability to use a toilet on my own I wouldn’t want to go this route. Not sure if anyone with ALS can count on that.
Best wishes- stay safe- Mary
 
This might be a stupid question but can you get the supra pubic cath and totally cap it off like you can a feeding tube? I guess I'm having trouble understanding the mechanics. Is it placed so no urine travels to your urethra and goes directly to the tube?
 
That's right Kim :)
 
The problem is that the bladder is susceptible to infection any time there is stasis of urine flow or an indwelling catheter. If you have a catheter, not using it would be a huge infection risk.
The stomach is different because of the acid environment.
 
Oh yes, but you can remove the bag and do a shower or similar I believe. Not leave it stopped up for hours at a time (even though that is how our bladders work - fill, then empty, rather than dribble all the day long ....
 
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