ChristineRK
Active member
- Joined
- Jun 6, 2019
- Messages
- 72
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- OH
- City
- Westlake
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
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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