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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??

Interested in more discussions like this? Go to the Bladder Conditions Support Group.

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jdbjsmith | @jdbjsmith | Nov 30, 2023
In reply to @unvecchiouomo "Like you, I have been self-cathing 4-5 times daily for several years now. No UTI's since..." + (show)
Profile picture for unvecchiouomo @unvecchiouomo

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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My concerns are the same. Have you seen a urologist? Did they give you any hope for a better lifestyle? I have been to the Mayo Clinic in Rochester for a consult. I go back for more testing Dec. 11-13. I was diagnosed in March of this year. I just wanted to make sure I had searched out all options..........if there is any.

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unvecchiouomo | @unvecchiouomo | Nov 30, 2023
In reply to @jdbjsmith "My concerns are the same. Have you seen a urologist? Did they give you any hope..." + (show)
Profile picture for jdbjsmith @jdbjsmith

My concerns are the same. Have you seen a urologist? Did they give you any hope for a better lifestyle? I have been to the Mayo Clinic in Rochester for a consult. I go back for more testing Dec. 11-13. I was diagnosed in March of this year. I just wanted to make sure I had searched out all options..........if there is any.

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Are you able to go without using a catheter?

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jdbjsmith | @jdbjsmith | Nov 30, 2023

No, I self cath 4 times a day.

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cavman9 | @cavman9 | Nov 30, 2023
In reply to @unvecchiouomo "How do you know how many ml you have in your bladder at any given time?..." + (show)
Profile picture for unvecchiouomo @unvecchiouomo

How do you know how many ml you have in your bladder at any given time? And a pocket catheter? Interesting, how does that work?

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The catheters I use are VaPro, made by Hollister. They have a bag to catch the urine which shows the amount of urine

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unvecchiouomo | @unvecchiouomo | Dec 1, 2023
In reply to @jdbjsmith "My concerns are the same. Have you seen a urologist? Did they give you any hope..." + (show)
Profile picture for jdbjsmith @jdbjsmith

My concerns are the same. Have you seen a urologist? Did they give you any hope for a better lifestyle? I have been to the Mayo Clinic in Rochester for a consult. I go back for more testing Dec. 11-13. I was diagnosed in March of this year. I just wanted to make sure I had searched out all options..........if there is any.

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I see a urologist once annually to confirm that I still require a prescription for the catheters (apparently a Medicare requirement). I have (knock on wood) remained healthy having no UTI's or other issues relating to my bladder. There are no alternatives (until modern medical science comes up with a bladder replacement, ha-ha). For as long as I have been cathing, I regret it and get bummed virtually every time. Mentally, I've not completely accepted this as a way of life that I cannot change.
So, having a "community of peers" to have discussions helps me to accept my fate. Does that make sense?

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1 reply
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Nicom | @pmenor | Dec 1, 2023

Anyone familiar with a Suprapubic catheter? I chose this over urethral catheter. I had bilateral hydronephrosis that needed attention. The Suprapubic catheter needs to be changed monthly and I chose to have my urologists office do it. Would love to hear from others with a Suprapubic catheter. Thanks.

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cavman9 | @cavman9 | Dec 1, 2023

Yes I feel the same way! Then I look around and see people who are blind or in a wheel chair, and I feel small for even thinking that!

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jdbjsmith | @jdbjsmith | Jan 29, 2024
In reply to @dtjskeet "Same diagnosis of my bladder. I have a severely enlarged prostate . I have had a..." + (show)
Profile picture for dtjskeet @dtjskeet

Same diagnosis of my bladder. I have a severely enlarged prostate . I have had a Foley catheter since July. Waiting for second opinion in a couple of weeks.

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I have been to the Mayo Clinic twice now. They are the only ones that have given any hope what so ever. (Two urologists in OK told me there wasn't anything they could do to help). Mayo says they can do a procedure called a HolEP, there's only 2 Drs at Mayo that do this procedure. Can't get in until July-August. They would router out the inside of the prostate (mine is severely enlarged as well). The doc said it would in time, reduce my self cath from 4 times a day to one or two times a day. Healing time approximatly 3 months, of course, there are side effects.... My family physician referred me to Mayo. I would like to talk to someone that has had this done!!

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jdbjsmith | @jdbjsmith | Jan 29, 2024
In reply to @cavman9 "Not at all! I use a vapro plus pocket catheter made by Hollister. They are packaged..." + (show)
Profile picture for cavman9 @cavman9

Not at all! I use a vapro plus pocket catheter made by Hollister. They are packaged to carry in a pocket, and are self lubricated! Kind of expensive, but insurance pays for most of it! My life style hasn’t changed hardly at all!

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See post jdbjsmith below...........

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jdbjsmith | @jdbjsmith | Jan 29, 2024
In reply to @cavman9 "Had a bladder diverticulum, and they operated on bladder to remove and also did a turp..." + (show)
Profile picture for cavman9 @cavman9

Had a bladder diverticulum, and they operated on bladder to remove and also did a turp at the same time! Unable to empty bladder completely, so now I self cath 4 times daily!

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See post from jdbjsmith on going to Mayo Clinic.......

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