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 <hotwheelsmiche...@gmail.com> > 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 <sbell...@cox.net > 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 <hotwheelsmiche...@gmail.com > > > 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 <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 > > > > <sbell...@cox.net 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 > > > > > > > > > >
