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 <sbell...@cox.net> 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 <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> 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> > 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 <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 > >
