Inactive bladder with NO elasticity remaining

Posted by jdbjsmith @jdbjsmith, Nov 26, 2023

Does anyone have a diagnosis of an inactive bladder (completely stretched out) with no elasticity left in it??

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Yes, and I would be interested in a discussion group for thoe of us choose the path of using intermittent catheters to empty our "completely stretched out" bladder. Anyone out there willing to form a chat group?

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Yes I am I interested! I self cath 4 times daily, had trouble with UTI’s, but think I have gotten it under control now! Would be interested in knowing what others are doing!

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@cavman9

Yes I am I interested! I self cath 4 times daily, had trouble with UTI’s, but think I have gotten it under control now! Would be interested in knowing what others are doing!

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Like you, I have been self-cathing 4-5 times daily for several years now. No UTI's since beginning (thankfully). My "what are others experiencing from self-cathing" questions include but not limited to: "flow" issues when emptying bladder i.e., sometimes abruptly stopping (as though the bladder did NOT seem to empty fully) and sometimes strong, to mild, to dripping flow (seemingly indicating that the bladder DID fully empty).
Other issues? For me, the experience of cathing in public restrooms (especially when crowded e.g., sporting events, concerts, etc.).
Sharing, or not, with others Family/friends the fact that this is a lifelong reality. 🙁
Other questions, concerns, experiences?
Personally, I am hoping to find a "community/support group", maybe this is the place for like minded individuals to share their concerns and experiences.

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Yes it is somewhat embarrassing, and have only shared with close family! What type of catheter do you use? What precautions do you take to prevent UTIs?

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I’m 77. I was catherized only once, about 60 years ago associated with a long childbirth, and I remember it as being painful, so I’m appalled to think I may have to come to this if I’m lucky enough to be long- lived. I thought resorting eventually to diapers was bad enough… Does self-cathing hurt? I’m at the stage where my bladder doesn’t inform me that it’s full until it’s quite full. Thank you for your informed perspectives.

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I had a Eurolift, however, my Bladder was stretched before that operation. Since the operation, the bladder stopped completely . I went to Penn to see if there was something to do to get Bladder working again even if it's not 100%. The answer was "NO" other than wait as it might come back by itself OR do a Turp surgery with some sort of stimulator in the lower back. My question to the group is - has anyone had a dead bladder that came back or has heard of other methods in trying to get it working?

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@nicky6969

I had a Eurolift, however, my Bladder was stretched before that operation. Since the operation, the bladder stopped completely . I went to Penn to see if there was something to do to get Bladder working again even if it's not 100%. The answer was "NO" other than wait as it might come back by itself OR do a Turp surgery with some sort of stimulator in the lower back. My question to the group is - has anyone had a dead bladder that came back or has heard of other methods in trying to get it working?

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Everything I know (that's not much since I am not a doctor) isas you were told, that is NO.
And I will NOT resort to surgery for a MAYBE better situation (until I am convinced otherwise). So...self cathing is my only way to "go". I'm in it for the long haul! I'm 72 and plan to hit the century mark. Damn, that's a whole lot of catheters 😉

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@brightwood

I’m 77. I was catherized only once, about 60 years ago associated with a long childbirth, and I remember it as being painful, so I’m appalled to think I may have to come to this if I’m lucky enough to be long- lived. I thought resorting eventually to diapers was bad enough… Does self-cathing hurt? I’m at the stage where my bladder doesn’t inform me that it’s full until it’s quite full. Thank you for your informed perspectives.

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When you have no other way to empty your bladder, you accept the fact that it's a means to an end and deal with it. There's absolutely no pain. I kid with the medical folks about having to get used to peeing through a straw" (they seem to get a kick out of that). It's inconvenient, no doubt, but for me it's much better than strapping a bag to my body for cathing. For me, THAT"S apalling. Plus I've been a group fitness instructor and personal trainer for 40 years (I'm 72 now), and the self cathing is the only way for me to keep my exercise routine. If in fact you have to begin with self cathing (which means you will always be self cathing as far as I understand it), you'll likely get used to it in the short term. Because of my "medical experience" (another story), I get upset every time I insert the damn thing to pee, but it has nothing to do with the task "at hand". 🙂

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@cavman9

Yes it is somewhat embarrassing, and have only shared with close family! What type of catheter do you use? What precautions do you take to prevent UTIs?

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I use a lubricated, straight tip "14 FR" (I think that's the diameter) catheter. And I believe it's 14 inches long. Preventing UTI's? I make sure that I wash my hands and penis before using. So far (knock on wood), no problems. And regarding the (for sure) embarrassing aspect, I think it was more on me to shed the secrecy. I found that my close friends are very understanding/empathetic which makes it easier to use the facilities when I'm out with them, or visiting their home.
From me, I'd like to know how you all know that you've basically been successful emptying your bladder. As I mentioned in a previous post, sometimes the flow simply stops abruptly (making me think that my bladder is not fully empty), and when SLOWLY removing it there is no more to come ou. Then other times the flow goes from strong, then mild, then when SLOWLY removing it smaller/weaker flow to dripping (which makes me think that for sure my bladder is empty). What are other experiences like?

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I had a bladder diverticulum some years ago and my bladder doesn’t tell me I have to go until it has 400 to 500 ml in it! Then I can go but only empty’s about 100 to 200 MLS. , because the muscles in the bladder aren’t strong. I use a pocket catheter which is easy to carry and it is also self lubricated. At night I instill acetic acid solution or a probiotic to keep me from getting UTI’s.

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