Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 I looked up the Mitrofanoff procedure...Don't know if it's the same. The supra pubic is a permanent cath inserted right above the pubic bone. Al At 03:37 PM 5/25/03 -0700, you wrote: >Is that the same as the mitrophnoph procedure? I remember someone on the >list telling about it a few months back and it sounded great. I am still >considering it for when h is older so that she will have more independance. >Jeni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 frankly, caths up the urethra hurt like hell and i'm very hard to cath. add a yeast infection to the mix and forget it. they're also closer to the rectum, and so closer to a big source of e-coli and other bugs that cause uti's. i also don't want the extra hardware to interfere with my happy fun sex life. and i hire male attendants...some are too squeamish about such an insertion (some of the grrls too). i'm looking forward to pee freedom! al At 04:09 PM 5/25/03 -0700, you wrote: >do you know what the advantage of this type of catheter is compared to the >regular kind? Ive had a regular catheter when i had my spine fused--it >also gave me a nasty infection. the person who invents a product or >solves my problem of not being able to pee independantly/when i want will >be worshiped by me! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 In regards to the question is a super-pubic cath the same as the Mitrophnoff, no way!! two totally different proceedurs the *sp* has a port/opening on the outside of your body withh a veery noticable tubes hanging out it's opening. the *mitro* is a surgery where they use your appendex as a canal and make your belly-button intto a hole thatt is connected to your bladder using the appendex. however when youu get the surgery they have you do a total bowel clean out which waas worse then the surgery. my appendex was unable to be used so thatss wwhy u have to clear out ur bowel in case they need to use your small intestine. wth the *mitro* there are noooo tubes hanging nnothing noticeeable but a scar about an inch long under you bbutton. if anybody wants ffurther info or any ??'s just yell as far as a sex life goes your parter would have no clue,my last bf had no idea we werent that close tho... jodi & mm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 thanks for the info. i had heard a little about the belly button thing. do you not have a tube in you at all times to drain your bladder? or do you insert it at regular intervals? At 07:08 PM 5/25/03 -0500, you wrote: >In regards to the question is a super-pubic cath the same as the >Mitrophnoff, no way!! two totally different proceedurs the *sp* has a >port/opening on the outside of your body withh a veery noticable tubes >hanging out it's opening. the *mitro* is a surgery where they use your >appendex as a canal and make your belly-button intto a hole thatt is >connected to your bladder using the appendex. however when youu get the >surgery they have you do a total bowel clean out which waas worse then >the surgery. my appendex was unable to be used so thatss wwhy u have to >clear out ur bowel in case they need to use your small intestine. >wth the *mitro* there are noooo tubes hanging nnothing noticeeable but a >scar about an inch long under you bbutton. >if anybody wants ffurther info or any ??'s just yell >as far as a sex life goes your parter would have no clue,my last bf had >no idea we werent that close tho... > >jodi & mm > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 alana~ the first two weeks u have it n all the time forr the track to form, after your two week check up thee dr. removes it along wth the stitches & the nurse teaches u to properly self-cath. you can stillgo vaginaaly too by the way. i encourage everybody onthis list who is strong enugh to do it & those who need help, i kick myself in the ass for not getting it sooner!!!! *jodi* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 ahh...that's why my urologist didn't recommend it. i can't self-cath and i wear a body jacket so it'd defeat the purpose. also, i sleep in a cuirass at night (negative pressure vent over belly and chest). thanks, jodi. i know what u mean by kicking yourself. 40 million uti's and an evil kidney stone later i'm getting the supra pub. any pain inserting cath? al At 07:38 PM 5/25/03 -0500, you wrote: >alana~ > > >the first two weeks u have it n all the time forr the track to form, >after your two week check up thee dr. removes it along wth the stitches > & the nurse teaches u to properly self-cath. you can stillgo vaginaaly >too by the way. >i encourage everybody onthis list who is strong enugh to do it & those >who need help, i kick myself in the ass for not getting it sooner!!!! >*jodi* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 start with your local urologist. esp. one who works with spinal cord injured folks. al At 05:49 PM 5/25/03 -0700, you wrote: >Ive heard the opening where the cath. goes in can permanently leak urine >though? I know a member on this list, i think her name was kristine, had >this problem (not sure if it is still an ongoing problem for >her?).....also, how do you suggest finding a Dr. who does this procedure, >i know many docs dont kow about it much? I live in northern calif and >wouldnt want to have to go across country to get it done. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 the *sp* ive heard many complaints about. i cannot self-cath either and the reason i got mine was for convenience i need a hoyer lift to pee i will not let ppl lift me, so when im out i dont have to hold it i pee publicly now,just pull over to pee. lol!! there is no way your body jacket would suffer or vent be disturbed by a mitrophnoff no way!! you can ask your urologist to refer you thats what i did. even if you ask & they dont know you can call me, & i'll ask my doc if he can refer you in your area hes a big-wig here!! jodi & mm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 just a question for those with the abdomen pee thingamabobs. if you got it done for independence issues, does it bother you that you still need assistance deficating? also, anyone who relieves themselves in a gutter needs to get some class. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 u were it all the time? and use a valve to release? my quad friends pee in gutters. At 08:04 PM 5/25/03 -0500, you wrote: >the *sp* ive heard many complaints about. i cannot self-cath either and >the reason i got mine was for convenience i need a hoyer lift to pee i >will not let ppl lift me, so when im out i dont have to hold it i pee >publicly now,just pull over to pee. lol!! there is no way your body >jacket would suffer or vent be disturbed by a mitrophnoff no way!! > > >you can ask your urologist to refer you thats what i did. even if you ask > & they dont know you can call me, & i'll ask my doc if he can refer you >in your area hes a big-wig here!! > >jodi & mm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2003 Report Share Posted May 25, 2003 the pee muscles are still being used i pee " normally " in the am & b4 bed, just to drain my urethra completly my bb doesnt leak & my friend hada leak & they just used bigger caths & detrol (gotta go commercial) it has helpd her. however we all have sma & our muscles are going to weaken everywhere in our bodies. i personaly am sexually active & i do kegels alll the time so i wont loose the muscle any faster. the quad friends are prbly using a diversion and a leg bag with a automatic drain. at least your friend dont pee in the hallway like the slugs that live here. jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2003 Report Share Posted May 26, 2003 Yep, I had the mitrofanoff procedure done nearly a year ago. There's definitely negatives and positives. I've had problems with it leaking all along. It's really strange though, it seems to go in cycles. Most of the time it hardly leaks at all. I keep a pad tucked into my pants that keeps my clothes dry. But like once a month, it'll get REALLY bad for a couple days, and I'll have to change clothes multiple times a day. Go figure! (And I thought I'd gotten rid of monthly cycle problems with my depo shots...) The doctors don't seem to have any ideas. I don't use mine on an extremely regular basis. When I'm at home, my mom's usually here to help me. And when I'm in school, I have a PA come by to get me in and out of bed, and once in the afternoon. If I can get away with just going to the bathroom then, I do. But it's SOOOO nice that these aren't my only options. If somebody's not around or I'm not at home, I can use the mitrofanoff. In July, my family's going to New Zealand (!!!!!!!!!) and this is the only way the long flight will work for me. So yeah. It gives me headaches. But I'm still glad I have it! ~e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2003 Report Share Posted May 26, 2003 actually needing assistance doesn't bother me. i've needed assistance for most everything most of my life. i do my bowel program 3-4 times per week either when i go to bed or get up. the big problem is i need to pee 4 times a day and in the middle of the night...even more so if i'm drinking enough water to keep kidney stones and infections away. i cannot sit on a toilet so have to lie down at home, work or my bf's house to use a bed pan. this takes 30-40 mins. and costs $12 a pop. it just doesn't work on so many levels, and these adult diapers suck...expensive, lumpy, humiliating, don't hold enough, and talk about butt rash. al Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2003 Report Share Posted May 27, 2003 In a message dated 5/25/2003 8:41:38 PM Central Daylight Time, lynnie53@... writes: > the quad friends are prbly using a diversion and a leg bag with a > automatic drain. at least your friend dont pee in the hallway like the > slugs that live here Where do you live that they could do that? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.