Re: [QUAD-L] bladder update
PMNR = Physical Medicine and Rehabilitation I'm not sure if you fully understand what a supra pubic catheter is? It's a foley catheter, inserted in the hole they make in your abdomen that sits in your bladder. There is literally an open hole in your abdomen and that is where the catheter comes out of, instead of your groin area. So, I used the foley catheter inserted in the supra pubic hole to drain my bladder. It is always there, and has the balloon that blows up and everything. At night, the overnight drainage bag hooked directly to the suprapubic catheter. When I "capped it off", I just used a flip valve on the indwelling catheter to open/close it to drain my urine out. Sorry for the confusion in my wording. You cannot remove the supra pubic catheter for much longer than it takes to change it out, as the hole will start closing up quickly. I am just outside of Fort Worth, so we have 2 different qualified docs - 1 in Dallas and 1 in Fort Worth. The Fort Worth doc was hands down the better of the 2. When I had my suprapubic it was terrible for me (and put in by the first doc in Dallas, who wasn't my favorite). The open hole just never seemed to heal properly (in the 6 months I had it), would constantly drain crap and always smelled (no matter how much I cleaned it). I also would always get low level dysreflexia with it and get uncomfortable feelings whenever I transferred or moved it. I also got crazy/ridiculous infections when I had it. My doc that did the Mitrofinoff (Fort Worth doc) disliked the supra pubics and thought they created more infections (but I didn't discuss in detail). He agreed with my PMNR doc on doing the mitrofinoff and here we are. It's always a battle between what you think/feel is the best for you and what doctors suggest - because they do not know everything. I am huge into "if it isn't broke, don't fix it" and am very resistant to change. My intermittent cathing wasn't broke, but I'm an aging quad and knew it just wasn't ideal anymore. On Tue, Dec 12, 2023 at 6:55 PM SHIRLEY BELL wrote: > what is a PMNR doc? When you used a night bag you must have used a floley. > Also, when you capped off the s pubic, did you use a reg cath to drain it > intermittently? Also, where did you have these surgeries? I am in RI sorry > to keep asking, it is confusing. I read online that with a supra pub you > can only use a foley, no capping off, and intermittent unless you have the > one you have now. I never get UTIs with the Foley so thought the sup pub > would be the same. my doctor says less infections with it? > > On 12/12/2023 7:28 PM EST Michelle Harkness > wrote: > > > Hey Shirley, I actually capped mine off and drained it periodically - > trying to sustain some bladder capacity. It was tiny though, and only > could hold about 100-150 cc's before I had to empty it. I did use a night > bag when sleeping to make things easier though. > > I would speak with your quad doc (PMNR doc) and a Female Pelvic Medicine > and Reconstructive Surgery doc (that's who did my Mitrofinoff). Between > them both, they should have the knowledge to tell you what your body is > able to have done to help you out the most. The whole purpose of mine was > to expand my bladder, help with infections and give me more independence. > What was right for me might not be right for you. I was just surprised at > all of the options and applications they have in the reconstructive surgery > side of things to help. so there might be a different fit that works > better for you. > > I've personally always avoided an indwelling catheter, based on my > personal feelings and the suggestions of every urologist I've had. Even my > reconstructive doc isn't a fan of the supra pubic catheters because of the > colonization of bacteria that occurs. The quad life we live is fraught > with tough decisions, but they do have a lot of things to try and help! > > On Tue, Dec 12, 2023 at 5:49 PM SHIRLEY BELL wrote: > > Hi Michelle, one question, when you did supra pubic did you use a Foley > catheter? you would have had to? Please let me know thanks! > > On 12/11/2023 9:52 PM EST Michelle Harkness > wrote: > > > Hey Shirley! I've been on this page forever and learned lots from y'all, > but I tend to keep kinda quiet. Not sure what your situation is exactly, > but I've been a C5-6 quad for 30 years and I had always done intermittent > cathing, relying on someone else for help with it. In February of this > year, I finally took the plunge and got a Mitrofinoff with bladder > augmentation. I had tried a suprapubic for about 6 months, but hated it and > the multiple never ending infections it caused, so I started looking more > into the Mitrofinoff then. I can now do my own cathing almost all of the > time, through a stoma in my belly button that I use a male 16" catheter > for. The bladder augmentation helped wonders, and I was pretty unfamiliar > with what that was, or what wonders it could do when I received it.
Re: [QUAD-L] bladder update
what is a PMNR doc? When you used a night bag you must have used a floley. Also, when you capped off the s pubic, did you use a reg cath to drain it intermittently? Also, where did you have these surgeries? I am in RI sorry to keep asking, it is confusing. I read online that with a supra pub you can only use a foley, no capping off, and intermittent unless you have the one you have now. I never get UTIs with the Foley so thought the sup pub would be the same. my doctor says less infections with it? > On 12/12/2023 7:28 PM EST Michelle Harkness > wrote: > > > Hey Shirley, I actually capped mine off and drained it periodically - trying > to sustain some bladder capacity. It was tiny though, and only could hold > about 100-150 cc's before I had to empty it. I did use a night bag when > sleeping to make things easier though. > > I would speak with your quad doc (PMNR doc) and a Female Pelvic Medicine and > Reconstructive Surgery doc (that's who did my Mitrofinoff). Between them > both, they should have the knowledge to tell you what your body is able to > have done to help you out the most. The whole purpose of mine was to expand > my bladder, help with infections and give me more independence. What was > right for me might not be right for you. I was just surprised at all of the > options and applications they have in the reconstructive surgery side of > things to help. so there might be a different fit that works better for you. > > > I've personally always avoided an indwelling catheter, based on my personal > feelings and the suggestions of every urologist I've had. Even my > reconstructive doc isn't a fan of the supra pubic catheters because of the > colonization of bacteria that occurs. The quad life we live is fraught with > tough decisions, but they do have a lot of things to try and help! > > On Tue, Dec 12, 2023 at 5:49 PM SHIRLEY BELL mailto:sbell...@cox.net> wrote: > > > Hi Michelle, one question, when you did supra pubic did you use a Foley > > catheter? you would have had to? Please let me know thanks! > > > > > On 12/11/2023 9:52 PM EST Michelle Harkness > > mailto:hotwheelsmiche...@gmail.com> wrote: > > > > > > > > > Hey Shirley! I've been on this page forever and learned lots from y'all, > > > but I tend to keep kinda quiet. Not sure what your situation is exactly, > > > but I've been a C5-6 quad for 30 years and I had always done intermittent > > > cathing, relying on someone else for help with it. In February of this > > > year, I finally took the plunge and got a Mitrofinoff with bladder > > > augmentation. I had tried a suprapubic for about 6 months, but hated it > > > and the multiple never ending infections it caused, so I started looking > > > more into the Mitrofinoff then. I can now do my own cathing almost all > > > of the time, through a stoma in my belly button that I use a male 16" > > > catheter for. The bladder augmentation helped wonders, and I was pretty > > > unfamiliar with what that was, or what wonders it could do when I > > > received it. It helps absorb the bladder spasms, gives you more capacity > > > and my doc said it helps lessen infections somehow (still trying to > > > figure that out). The only draw back is they use your bowel for the > > > augmentation, which in turn causes lots of goobers in your urine (doc > > > says the bowel still does what its supposed to do). But it's super nice > > > to not have to lay down 4 times a day to use the restroom, and basically > > > pee wherever I want to! > > > > > > Have an amazing day! > > > > > > Michelle > > > > > > On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com > > > mailto:wheelch...@aol.com mailto:wheelch...@aol.com> > > > wrote: > > > > > > > > > > > Thanks for the update. The bladder, over time, for those with > > > > indwelling caths, will/can shrink to the size of a walnut, compared to > > > > what it used to be. When you consider the size of the cath, plus the > > > > balloon, inside a walnut. there is not much room for urine to collect > > > > and it may pass quicker. > > > > Best Wishes. > > > > > > > > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL > > > > mailto:sbell...@cox.net> wrote: > > > > > > > > > > > > Hi all, well I had my cystoscopy and all he found was a shrunken > > > > bladder. That is what is causing spasms on and off and rejecting > > > > catheters on and off. Not lasting as long. They are going to change my > > > > meds to see if that helps. Botox is an option as well. 47 years of > > > > indwelling catheter use has taken a toll. Not much they can do but I am > > > > looking into it. There is an external catheter option called a pur wick > > > > for women of course but I have doubts about it. I am trying not to > > > > worry but geez, not great. A suprapubic may be an option, not a cure > > > > but may be easier for me and my caretakers to deal with this. Hope
Re: [QUAD-L] bladder update
Hey Shirley, I actually capped mine off and drained it periodically - trying to sustain some bladder capacity. It was tiny though, and only could hold about 100-150 cc's before I had to empty it. I did use a night bag when sleeping to make things easier though. I would speak with your quad doc (PMNR doc) and a Female Pelvic Medicine and Reconstructive Surgery doc (that's who did my Mitrofinoff). Between them both, they should have the knowledge to tell you what your body is able to have done to help you out the most. The whole purpose of mine was to expand my bladder, help with infections and give me more independence. What was right for me might not be right for you. I was just surprised at all of the options and applications they have in the reconstructive surgery side of things to help. so there might be a different fit that works better for you. I've personally always avoided an indwelling catheter, based on my personal feelings and the suggestions of every urologist I've had. Even my reconstructive doc isn't a fan of the supra pubic catheters because of the colonization of bacteria that occurs. The quad life we live is fraught with tough decisions, but they do have a lot of things to try and help! On Tue, Dec 12, 2023 at 5:49 PM SHIRLEY BELL wrote: > Hi Michelle, one question, when you did supra pubic did you use a Foley > catheter? you would have had to? Please let me know thanks! > > On 12/11/2023 9:52 PM EST Michelle Harkness > wrote: > > > Hey Shirley! I've been on this page forever and learned lots from y'all, > but I tend to keep kinda quiet. Not sure what your situation is exactly, > but I've been a C5-6 quad for 30 years and I had always done intermittent > cathing, relying on someone else for help with it. In February of this > year, I finally took the plunge and got a Mitrofinoff with bladder > augmentation. I had tried a suprapubic for about 6 months, but hated it and > the multiple never ending infections it caused, so I started looking more > into the Mitrofinoff then. I can now do my own cathing almost all of the > time, through a stoma in my belly button that I use a male 16" catheter > for. The bladder augmentation helped wonders, and I was pretty unfamiliar > with what that was, or what wonders it could do when I received it. It > helps absorb the bladder spasms, gives you more capacity and my doc said it > helps lessen infections somehow (still trying to figure that out). The > only draw back is they use your bowel for the augmentation, which in turn > causes lots of goobers in your urine (doc says the bowel still does what > its supposed to do). But it's super nice to not have to lay down 4 times a > day to use the restroom, and basically pee wherever I want to! > > Have an amazing day! > > Michelle > > On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com > wrote: > > > Thanks for the update. The bladder, over time, for those with indwelling > caths, will/can shrink to the size of a walnut, compared to what it used to > be. When you consider the size of the cath, plus the balloon, inside a > walnut. there is not much room for urine to collect and it may pass > quicker. > Best Wishes. > > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL < > sbell...@cox.net> wrote: > > > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. > That is what is causing spasms on and off and rejecting catheters on and > off. Not lasting as long. They are going to change my meds to see if that > helps. Botox is an option as well. 47 years of indwelling catheter use has > taken a toll. Not much they can do but I am looking into it. There is an > external catheter option called a pur wick for women of course but I have > doubts about it. I am trying not to worry but geez, not great. A suprapubic > may be an option, not a cure but may be easier for me and my caretakers to > deal with this. Hope you all doing ok, quad life is an ongoing challenge > for sure. Have a great holiday season.Shirley If you want to see how I make > my living check out my Etsy shop here. > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav > >
Re: [QUAD-L] bladder update
Hi Michelle, one question, when you did supra pubic did you use a Foley catheter? you would have had to? Please let me know thanks! > On 12/11/2023 9:52 PM EST Michelle Harkness > wrote: > > > Hey Shirley! I've been on this page forever and learned lots from y'all, but > I tend to keep kinda quiet. Not sure what your situation is exactly, but > I've been a C5-6 quad for 30 years and I had always done intermittent > cathing, relying on someone else for help with it. In February of this year, > I finally took the plunge and got a Mitrofinoff with bladder augmentation. I > had tried a suprapubic for about 6 months, but hated it and the multiple > never ending infections it caused, so I started looking more into the > Mitrofinoff then. I can now do my own cathing almost all of the time, > through a stoma in my belly button that I use a male 16" catheter for. The > bladder augmentation helped wonders, and I was pretty unfamiliar with what > that was, or what wonders it could do when I received it. It helps absorb > the bladder spasms, gives you more capacity and my doc said it helps lessen > infections somehow (still trying to figure that out). The only draw back is > they use your bowel for the augmentation, which in turn causes lots of > goobers in your urine (doc says the bowel still does what its supposed to > do). But it's super nice to not have to lay down 4 times a day to use the > restroom, and basically pee wherever I want to! > > Have an amazing day! > > Michelle > > On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com mailto:wheelch...@aol.com > mailto:wheelch...@aol.com> wrote: > > > > > Thanks for the update. The bladder, over time, for those with indwelling > > caths, will/can shrink to the size of a walnut, compared to what it used to > > be. When you consider the size of the cath, plus the balloon, inside a > > walnut. there is not much room for urine to collect and it may pass > > quicker. > > Best Wishes. > > > > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL > > mailto:sbell...@cox.net> wrote: > > > > > > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. > > That is what is causing spasms on and off and rejecting catheters on and > > off. Not lasting as long. They are going to change my meds to see if that > > helps. Botox is an option as well. 47 years of indwelling catheter use has > > taken a toll. Not much they can do but I am looking into it. There is an > > external catheter option called a pur wick for women of course but I have > > doubts about it. I am trying not to worry but geez, not great. A suprapubic > > may be an option, not a cure but may be easier for me and my caretakers to > > deal with this. Hope you all doing ok, quad life is an ongoing challenge > > for sure. Have a great holiday season.Shirley If you want to see how I make > > my living check out my Etsy shop here. > > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav > > >
Re: [QUAD-L] bladder update
Thank you Michelle. I don't think I would be a candidate for this because I used a foley all these yrs but I will ask. Good luck to us all on this quad journey! > On 12/11/2023 9:52 PM EST Michelle Harkness > wrote: > > > Hey Shirley! I've been on this page forever and learned lots from y'all, but > I tend to keep kinda quiet. Not sure what your situation is exactly, but > I've been a C5-6 quad for 30 years and I had always done intermittent > cathing, relying on someone else for help with it. In February of this year, > I finally took the plunge and got a Mitrofinoff with bladder augmentation. I > had tried a suprapubic for about 6 months, but hated it and the multiple > never ending infections it caused, so I started looking more into the > Mitrofinoff then. I can now do my own cathing almost all of the time, > through a stoma in my belly button that I use a male 16" catheter for. The > bladder augmentation helped wonders, and I was pretty unfamiliar with what > that was, or what wonders it could do when I received it. It helps absorb > the bladder spasms, gives you more capacity and my doc said it helps lessen > infections somehow (still trying to figure that out). The only draw back is > they use your bowel for the augmentation, which in turn causes lots of > goobers in your urine (doc says the bowel still does what its supposed to > do). But it's super nice to not have to lay down 4 times a day to use the > restroom, and basically pee wherever I want to! > > Have an amazing day! > > Michelle > > On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com mailto:wheelch...@aol.com > mailto:wheelch...@aol.com> wrote: > > > > > Thanks for the update. The bladder, over time, for those with indwelling > > caths, will/can shrink to the size of a walnut, compared to what it used to > > be. When you consider the size of the cath, plus the balloon, inside a > > walnut. there is not much room for urine to collect and it may pass > > quicker. > > Best Wishes. > > > > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL > > mailto:sbell...@cox.net> wrote: > > > > > > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. > > That is what is causing spasms on and off and rejecting catheters on and > > off. Not lasting as long. They are going to change my meds to see if that > > helps. Botox is an option as well. 47 years of indwelling catheter use has > > taken a toll. Not much they can do but I am looking into it. There is an > > external catheter option called a pur wick for women of course but I have > > doubts about it. I am trying not to worry but geez, not great. A suprapubic > > may be an option, not a cure but may be easier for me and my caretakers to > > deal with this. Hope you all doing ok, quad life is an ongoing challenge > > for sure. Have a great holiday season.Shirley If you want to see how I make > > my living check out my Etsy shop here. > > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav > > >
Re: [QUAD-L] bladder update
How can you have this Mitrofinoff surgery after yrs of a folley? > On 12/12/2023 4:12 PM EST Michelle Harkness > wrote: > > > Eric - I was TERRIFIED of the Mitrofinoff surgery for about 28 years. I had > never had a surgery other than my spinal fusion, so I was not on board with > signing up for anything major! I'm also on blood thinners because of blood > clots/pulmonary embolism and I'm overweight, so add those two layers of suck > to the mix as well. About 2 months after the pandemic hit my gallbladder > decided it didn't like me, so I had to have emergency surgery to get that > taken out (in the hospital completely ALONE for 5 days). I was scared, being > my first big surgery, but it gave me a bit of confidence that the unknown > wasn't as scary as previously thought. I've also done childbirth as a quad, > without an epidural (not by choice, it just happened that way) so I maybe had > a bit of false confidence added in the mix? My quad doc also said that I > wanted to have it when my body could better recover before I got too old, > considering I just keep getting older... Either way, it was an approximate 4 > week recovery with the Mitrofinoff, but my least favorite and worst part was > the emptying of the bowels the day before. A day of bed rest and a crazy > amount of poo to handle! I did about 2 weeks of bed rest healing and another > 2 of light duty at home. No driving for a month and no car rides for a > month. My bowel bounced back really well from having the 10" cut out of it > for the augmentation, and my incision from belly button to top of pubic line > also healed much faster than I anticipated. My only regret was not getting > it done sooner and I kicked my own butt for waiting so long! Especially when > I have so much more freedom with it. If interested, I would see which docs > are in your area. I actually declined the first doc (who did my suprapubic) > as he was an ass and did the surgery a bit different. My second doc I went > to was soo much better and even had experience watching Dr. Mitrofinoff > perform his surgery. That doc knew his stuff and had an excellent procedure. > I had a 3 hour surgery and was out of the hospital and home in 3 days. > > I'm interested to know how the gentamicin works, as I still get way to many > UTI"S. I flush my bladder every other night, just to help keep my new > goobers out and in the hopes of keeping infections lower. > > On Tue, Dec 12, 2023 at 2:24 PM Eric Olson mailto:whee...@wi.rr.com> wrote: > > > I had my supra pubic done a couple decades ago and it certainly makes > > things easier for my care givers. I still have problems with uti's. I was > > thinking about the Mitrofinoff,but it is a no joke surgery. I have started > > doing gentamicin bladder irrigations. Gentamicin is an antibiotic. It's > > not supposed to cause antibiotic resistance the way antibiotics taken > > systemically do. I will let everyone know how that goes. I may still > > have to go to the Mitrofinoff at some point, but that surgery scares me > > > > On Mon, Dec 11, 2023 at 2:34 PM SHIRLEY BELL > mailto:sbell...@cox.net> wrote: > > > > > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. > > > That is what is causing spasms on and off and rejecting catheters on and > > > off. Not lasting as long. They are going to change my meds to see if that > > > helps. Botox is an option as well. 47 years of indwelling catheter use > > > has taken a toll. Not much they can do but I am looking into it. There is > > > an external catheter option called a pur wick for women of course but I > > > have doubts about it. I am trying not to worry but geez, not great. A > > > suprapubic may be an option, not a cure but may be easier for me and my > > > caretakers to deal with this. Hope you all doing ok, quad life is an > > > ongoing challenge for sure. Have a great holiday season.Shirley If you > > > want to see how I make my living check out my Etsy shop here. > > > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav > > > > > >
Re: [QUAD-L] bladder update
Eric - I was TERRIFIED of the Mitrofinoff surgery for about 28 years. I had never had a surgery other than my spinal fusion, so I was not on board with signing up for anything major! I'm also on blood thinners because of blood clots/pulmonary embolism and I'm overweight, so add those two layers of suck to the mix as well. About 2 months after the pandemic hit my gallbladder decided it didn't like me, so I had to have emergency surgery to get that taken out (in the hospital completely ALONE for 5 days). I was scared, being my first big surgery, but it gave me a bit of confidence that the unknown wasn't as scary as previously thought. I've also done childbirth as a quad, without an epidural (not by choice, it just happened that way) so I maybe had a bit of false confidence added in the mix? My quad doc also said that I wanted to have it when my body could better recover before I got too old, considering I just keep getting older... Either way, it was an approximate 4 week recovery with the Mitrofinoff, but my least favorite and worst part was the emptying of the bowels the day before. A day of bed rest and a crazy amount of poo to handle! I did about 2 weeks of bed rest healing and another 2 of light duty at home. No driving for a month and no car rides for a month. My bowel bounced back really well from having the 10" cut out of it for the augmentation, and my incision from belly button to top of pubic line also healed much faster than I anticipated. My only regret was not getting it done sooner and I kicked my own butt for waiting so long! Especially when I have so much more freedom with it. If interested, I would see which docs are in your area. I actually declined the first doc (who did my suprapubic) as he was an ass and did the surgery a bit different. My second doc I went to was soo much better and even had experience watching Dr. Mitrofinoff perform his surgery. That doc knew his stuff and had an excellent procedure. I had a 3 hour surgery and was out of the hospital and home in 3 days. I'm interested to know how the gentamicin works, as I still get way to many UTI"S. I flush my bladder every other night, just to help keep my new goobers out and in the hopes of keeping infections lower. On Tue, Dec 12, 2023 at 2:24 PM Eric Olson wrote: > I had my supra pubic done a couple decades ago and it certainly makes > things easier for my care givers. I still have problems with uti's. I was > thinking about the Mitrofinoff,but it is a no joke surgery. I have started > doing gentamicin bladder irrigations. Gentamicin is an antibiotic. It's > not supposed to cause antibiotic resistance the way antibiotics taken > systemically do. I will let everyone know how that goes. I may still > have to go to the Mitrofinoff at some point, but that surgery scares me > > On Mon, Dec 11, 2023 at 2:34 PM SHIRLEY BELL wrote: > >> Hi all, well I had my cystoscopy and all he found was a shrunken bladder. >> That is what is causing spasms on and off and rejecting catheters on and >> off. Not lasting as long. They are going to change my meds to see if that >> helps. Botox is an option as well. 47 years of indwelling catheter use has >> taken a toll. Not much they can do but I am looking into it. There is an >> external catheter option called a pur wick for women of course but I have >> doubts about it. I am trying not to worry but geez, not great. A suprapubic >> may be an option, not a cure but may be easier for me and my caretakers to >> deal with this. Hope you all doing ok, quad life is an ongoing challenge >> for sure. Have a great holiday season.Shirley If you want to see how I make >> my living check out my Etsy shop here. >> https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav >> >
Re: [QUAD-L] bladder update
I had my supra pubic done a couple decades ago and it certainly makes things easier for my care givers. I still have problems with uti's. I was thinking about the Mitrofinoff,but it is a no joke surgery. I have started doing gentamicin bladder irrigations. Gentamicin is an antibiotic. It's not supposed to cause antibiotic resistance the way antibiotics taken systemically do. I will let everyone know how that goes. I may still have to go to the Mitrofinoff at some point, but that surgery scares me On Mon, Dec 11, 2023 at 2:34 PM SHIRLEY BELL wrote: > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. > That is what is causing spasms on and off and rejecting catheters on and > off. Not lasting as long. They are going to change my meds to see if that > helps. Botox is an option as well. 47 years of indwelling catheter use has > taken a toll. Not much they can do but I am looking into it. There is an > external catheter option called a pur wick for women of course but I have > doubts about it. I am trying not to worry but geez, not great. A suprapubic > may be an option, not a cure but may be easier for me and my caretakers to > deal with this. Hope you all doing ok, quad life is an ongoing challenge > for sure. Have a great holiday season.Shirley If you want to see how I make > my living check out my Etsy shop here. > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav >
Re: [QUAD-L] bladder update
Hey Shirley! I've been on this page forever and learned lots from y'all, but I tend to keep kinda quiet. Not sure what your situation is exactly, but I've been a C5-6 quad for 30 years and I had always done intermittent cathing, relying on someone else for help with it. In February of this year, I finally took the plunge and got a Mitrofinoff with bladder augmentation. I had tried a suprapubic for about 6 months, but hated it and the multiple never ending infections it caused, so I started looking more into the Mitrofinoff then. I can now do my own cathing almost all of the time, through a stoma in my belly button that I use a male 16" catheter for. The bladder augmentation helped wonders, and I was pretty unfamiliar with what that was, or what wonders it could do when I received it. It helps absorb the bladder spasms, gives you more capacity and my doc said it helps lessen infections somehow (still trying to figure that out). The only draw back is they use your bowel for the augmentation, which in turn causes lots of goobers in your urine (doc says the bowel still does what its supposed to do). But it's super nice to not have to lay down 4 times a day to use the restroom, and basically pee wherever I want to! Have an amazing day! Michelle On Mon, Dec 11, 2023 at 3:58 PM wheelch...@aol.com wrote: > Thanks for the update. The bladder, over time, for those with indwelling > caths, will/can shrink to the size of a walnut, compared to what it used to > be. When you consider the size of the cath, plus the balloon, inside a > walnut. there is not much room for urine to collect and it may pass > quicker. > Best Wishes. > > On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL < > sbell...@cox.net> wrote: > > > Hi all, well I had my cystoscopy and all he found was a shrunken bladder. > That is what is causing spasms on and off and rejecting catheters on and > off. Not lasting as long. They are going to change my meds to see if that > helps. Botox is an option as well. 47 years of indwelling catheter use has > taken a toll. Not much they can do but I am looking into it. There is an > external catheter option called a pur wick for women of course but I have > doubts about it. I am trying not to worry but geez, not great. A suprapubic > may be an option, not a cure but may be easier for me and my caretakers to > deal with this. Hope you all doing ok, quad life is an ongoing challenge > for sure. Have a great holiday season.Shirley If you want to see how I make > my living check out my Etsy shop here. > https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav >
Re: [QUAD-L] bladder update
Thanks for the update. The bladder, over time, for those with indwelling caths, will/can shrink to the size of a walnut, compared to what it used to be. When you consider the size of the cath, plus the balloon, inside a walnut. there is not much room for urine to collect and it may pass quicker.Best Wishes. On Monday, December 11, 2023 at 02:34:15 PM CST, SHIRLEY BELL wrote: Hi all, well I had my cystoscopy and all he found was a shrunken bladder. That is what is causing spasms on and off and rejecting catheters on and off. Not lasting as long. They are going to change my meds to see if that helps. Botox is an option as well. 47 years of indwelling catheter use has taken a toll. Not much they can do but I am looking into it. There is an external catheter option called a pur wick for women of course but I have doubts about it. I am trying not to worry but geez, not great. A suprapubic may be an option, not a cure but may be easier for me and my caretakers to deal with this. Hope you all doing ok, quad life is an ongoing challenge for sure. Have a great holiday season.Shirley If you want to see how I make my living check out my Etsy shop here. https://www.etsy.com/shop/ShirleyBell?ref=seller-platform-mcnav
