Re: [QUAD-L] Need help with options to help catheter go in

[Danny Hearn]

WOW, LORIYOU SURE ARE DEALING WITH MORE THAN ENOUGH FOR ANYONE RIGHT NOW, 
SORRY FOR ALL YOUR DEALING WITH AND ABOUT YOUR  DAUGHTER/DOG. PRAYING FOR 
THINGS TO TURN AROUND SOME FOR YOU, GOD BLESS YOU.  DAN H*** 

On Tuesday, May 8, 2018 6:59 PM, Lori Michaelson  
wrote:
 

 I was forced to get a Suprapubic catheter thanks to an ear responsible home 
health agency nurse blowing up the balloon in my urethra for the first time in 
36 years which stretched my urethra beyond repair. I needed surgery and was 
given the option for either a Bladder Neck Closure with a suprapubic catheter 
or an Ileal Conduit. I chose the former since it was much simpler (less than 
two days in the hospital... actually an overnighter) while the Ileal Conduit is 
a huge, risky surgery and usually for those who have been diagnosed with 
bladder cancer.
5 months later (last November) during a cystoscopy my urologist sought a 
suspicious growth for the first time but didn't think it would be anything 
serious. He scheduled a bladder biopsy for this year which I had done on 
February 25. I got the news just a few days later that it was Superficial 
Bladder Cancer and now he wants me to have the bladder removed so any cancer 
cells do not invade the bladder or travel elsewhere.
I can't believe my luck and now I am just down and out after I was happy with 
the Suprapubic catheter (even though my urethral catheter was working fine 
before I was hurt) and now this.
To add insult to injury, when I was in the hospital for the bladder biopsy I 
had acquired hospital acquired MRSA in my bladder and after two different 
antibiotics and two different doses of oral antibiotics that it was said to be 
sensitive to (and I saw the culture and sensitivity report). I feel like my 
bladder is on fire and my home health agency nurse (a good one I have had for 
over a year and a half) took a specimen to the lab last Thursday morning to see 
if it is still present (which I'm sure it is because these are the only 
symptoms I get with a bladder infection) and the lab lost the specimen! I had 
to have another one taken over today. Now I have to wait for results again for 
most probably put on IV antibiotics with Vancomycin.
I just lost my best friend (my Golden Retriever daughter) and grieving over 
that. Ironically, we were both diagnosed with cancer during the same two-month 
period of time.
~LoriC-4/5 complete quad, 38 years post
On Tue, May 8, 2018 at 4:05 PM, Don Price  wrote:

 Ron (and all):
I'm c5, 36 years post injury and got the suprapubic a little over a year and a 
half ago. For me it has been one of the best decisions I've made. If I could 
turn back time I would've done it years ago. For the preceding 34 years I wore 
a condom cath and legbag. My bladder always voided reflexively and my residual 
amount (urine not voided)  was not too much. However, having any residual urine 
sitting in the bladder is a perfect setup for UTIs, and I got my share. Over 
the years, as my bladder slowly stretched out, my residuals increased and so 
did my UTIs. 
Two years ago I was having multiple UTIs, which caused my penis to do the 
"frightened turtle," when I peed, which, in turn caused my catheters to 
constantly leak. I was at my wits end and VERY frustrated. That's when I made 
the decision to look into a suprapubic (a number of my quad friends had them 
already.) Looking back, I'm not sure why I was ever adverse to getting a 
suprapubic. I think it seemed "unnatural" to have another hole in my body. An 
external condom seemed more "normal." Now that I have the "supertube," as I've 
heard it called, I see that pissing myself or constantly having UTIs was more 
unnatural than a small tube through my lower belly.
I haven't had a UTI in over a year! (*knocks on wood*) That's a record for me!
So, the actual procedure was a breeze. It was outpatient surgey. I went in at 
10am, they knocked me out for a few minutes and when I woke up the surgery was 
done. My buddy drove me home by 2pm. No pain, no complications. Of course, that 
doesn't mean everyone has the same experience.
The suprapubic is simply a foley catheter that goes into your bladder through 
your pubic area rather than through your penis/urethra. My tube is 16fr, but 
they can be different sizes (one of my friends has a 24fr suprapubic.) You'll 
want to discuss the size with your urologist--I'm really not sure why the 
different sizes. Anyone? It might have to do with how much sediment you 
void--some people seem to produce more sediment which may clog up the tube, 
hence needing a larger tube.
The suprapubic should be changed by a qualified medical person about once a 
month. I have a homecare nurse who changes mine on a monthly visit. The site of 
the entry hole (stoma) should be kept clean and dry as much as possible. I 
still have some light bleeding and weeping over a year after the surgery, but 
it's very minor and the care is minimal. Some 

Re: [QUAD-L] Need help with options to help catheter go in

[Lori Michaelson]

I was forced to get a Suprapubic catheter thanks to an ear responsible home
health agency nurse blowing up the balloon in my urethra for the first time
in 36 years which stretched my urethra beyond repair. I needed surgery and
was given the option for either a Bladder Neck Closure with a suprapubic
catheter or an Ileal Conduit. I chose the former since it was much simpler
(less than two days in the hospital... actually an overnighter) while the
Ileal Conduit is a huge, risky surgery and usually for those who have been
diagnosed with bladder cancer.

5 months later (last November) during a cystoscopy my urologist sought a
suspicious growth for the first time but didn't think it would be anything
serious. He scheduled a bladder biopsy for this year which I had done on
February 25. I got the news just a few days later that it was Superficial
Bladder Cancer and now he wants me to have the bladder removed so any
cancer cells do not invade the bladder or travel elsewhere.

I can't believe my luck and now I am just down and out after I was happy
with the Suprapubic catheter (even though my urethral catheter was working
fine before I was hurt) and now this.

To add insult to injury, when I was in the hospital for the bladder biopsy
I had acquired hospital acquired MRSA in my bladder and after two different
antibiotics and two different doses of oral antibiotics that it was said to
be sensitive to (and I saw the culture and sensitivity report). I feel like
my bladder is on fire and my home health agency nurse (a good one I have
had for over a year and a half) took a specimen to the lab last Thursday
morning to see if it is still present (which I'm sure it is because these
are the only symptoms I get with a bladder infection) and the lab lost the
specimen! I had to have another one taken over today. Now I have to wait
for results again for most probably put on IV antibiotics with Vancomycin.

I just lost my best friend (my Golden Retriever daughter) and grieving over
that. Ironically, we were both diagnosed with cancer during the same
two-month period of time.

~Lori
C-4/5 complete quad, 38 years post

On Tue, May 8, 2018 at 4:05 PM, Don Price  wrote:

> Ron (and all):
>
> I'm c5, 36 years post injury and got the suprapubic a little over a year
> and a half ago. For me it has been one of the best decisions I've made. If
> I could turn back time I would've done it years ago. For the preceding 34
> years I wore a condom cath and legbag. My bladder always voided reflexively
> and my residual amount (urine not voided)  was not too much. However,
> having any residual urine sitting in the bladder is a perfect setup for
> UTIs, and I got my share. Over the years, as my bladder slowly stretched
> out, my residuals increased and so did my UTIs.
>
> Two years ago I was having multiple UTIs, which caused my penis to do the
> "frightened turtle," when I peed, which, in turn caused my catheters to
> constantly leak. I was at my wits end and VERY frustrated. That's when I
> made the decision to look into a suprapubic (a number of my quad friends
> had them already.) Looking back, I'm not sure why I was ever adverse to
> getting a suprapubic. I think it seemed "unnatural" to have another hole in
> my body. An external condom seemed more "normal." Now that I have the
> "supertube," as I've heard it called, I see that pissing myself or
> constantly having UTIs was more unnatural than a small tube through my
> lower belly.
>
> I haven't had a UTI in over a year! (*knocks on wood*) That's a record for
> me!
>
> So, the actual procedure was a breeze. It was outpatient surgey. I went in
> at 10am, they knocked me out for a few minutes and when I woke up the
> surgery was done. My buddy drove me home by 2pm. No pain, no complications.
> Of course, that doesn't mean everyone has the same experience.
>
> The suprapubic is simply a foley catheter that goes into your bladder
> through your pubic area rather than through your penis/urethra. My tube is
> 16fr, but they can be different sizes (one of my friends has a 24fr
> suprapubic.) You'll want to discuss the size with your urologist--I'm
> really not sure why the different sizes. Anyone? It might have to do with
> how much sediment you void--some people seem to produce more sediment which
> may clog up the tube, hence needing a larger tube.
>
> The suprapubic should be changed by a qualified medical person about once
> a month. I have a homecare nurse who changes mine on a monthly visit. The
> site of the entry hole (stoma) should be kept clean and dry as much as
> possible. I still have some light bleeding and weeping over a year after
> the surgery, but it's very minor and the care is minimal. Some guys use a
> small gauze pad around the site to help keep it dry. I don't have sensation
> at the site of the suprapubic, so I can't say if it hurts. I do know it's
> sensitive when I wash it.
>
> I hook up to a legbag during the day and a nightbag at night. I can drink

Re: [QUAD-L] Need help with options to help catheter go in

[Don Price]

 Ron (and all):
I'm c5, 36 years post injury and got the suprapubic a little over a year and a 
half ago. For me it has been one of the best decisions I've made. If I could 
turn back time I would've done it years ago. For the preceding 34 years I wore 
a condom cath and legbag. My bladder always voided reflexively and my residual 
amount (urine not voided)  was not too much. However, having any residual urine 
sitting in the bladder is a perfect setup for UTIs, and I got my share. Over 
the years, as my bladder slowly stretched out, my residuals increased and so 
did my UTIs. 
Two years ago I was having multiple UTIs, which caused my penis to do the 
"frightened turtle," when I peed, which, in turn caused my catheters to 
constantly leak. I was at my wits end and VERY frustrated. That's when I made 
the decision to look into a suprapubic (a number of my quad friends had them 
already.) Looking back, I'm not sure why I was ever adverse to getting a 
suprapubic. I think it seemed "unnatural" to have another hole in my body. An 
external condom seemed more "normal." Now that I have the "supertube," as I've 
heard it called, I see that pissing myself or constantly having UTIs was more 
unnatural than a small tube through my lower belly.
I haven't had a UTI in over a year! (*knocks on wood*) That's a record for me!
So, the actual procedure was a breeze. It was outpatient surgey. I went in at 
10am, they knocked me out for a few minutes and when I woke up the surgery was 
done. My buddy drove me home by 2pm. No pain, no complications. Of course, that 
doesn't mean everyone has the same experience.
The suprapubic is simply a foley catheter that goes into your bladder through 
your pubic area rather than through your penis/urethra. My tube is 16fr, but 
they can be different sizes (one of my friends has a 24fr suprapubic.) You'll 
want to discuss the size with your urologist--I'm really not sure why the 
different sizes. Anyone? It might have to do with how much sediment you 
void--some people seem to produce more sediment which may clog up the tube, 
hence needing a larger tube.
The suprapubic should be changed by a qualified medical person about once a 
month. I have a homecare nurse who changes mine on a monthly visit. The site of 
the entry hole (stoma) should be kept clean and dry as much as possible. I 
still have some light bleeding and weeping over a year after the surgery, but 
it's very minor and the care is minimal. Some guys use a small gauze pad around 
the site to help keep it dry. I don't have sensation at the site of the 
suprapubic, so I can't say if it hurts. I do know it's sensitive when I wash 
it. 
I hook up to a legbag during the day and a nightbag at night. I can drink as 
much as I want without ever having to worry about a leaky condom catheter 
(hooray!) or AD from a too-full bladder (double hooray!) Just make sure to 
empty the bag as needed. Also, if the tube becomes pinched or clogged it's 
possible you could get a little AD, but that has not happened to me. 
If you're sexually active it sure is nice having your penis free and 
unobstructed for sex. My girlfriend is a fan of the suprapubic--no more bladder 
accidents during sexual activity. My urologist assured me that the surgery 
would not affect my ability to get a reflexogenic erection, as the surgery goes 
nowhere near those nerves. However, for about 6 months post-surgery I noticed 
my erections were not as good as pre-surgery so I was concerned. That all 
changed with time, and everything is back to normal for me--I'm very happy.
Of course, *cue standard disclaimer*: everyone is different, so be sure to 
check all your options. 
Best of luck to you.
DonTempe, AZC5

Re: [QUAD-L] Need help with options to help catheter go in

[Randy Anderson]

 Something like this only not so "cute".
https://www.ebay.com/itm/Travel-CATHETER-BAG-COVER-Urine-bag-Foley-Tube-cover-Seniors-Elderly-Kids-2000mL/152978726815?hash=item239e3e1f9f:g:w3sAAOSwBnZapGOn


On Tue, May 1, 2018 at 5:25 PM, Randy Anderson 
wrote:

> Hello Ron
> I am a C4/5 paralyzed from the neck down. I went with the suprapubic about
> 4 months after my accident, while at rehab.
>
> Your concern about the bladder no longer expanding: I've thought about
> this also but have never asked a urologist about it. I've been a quad for
> 20 years and went to my urologist the 1st part of last month and he said
> "for having a catheter as long as I have I've got the best looking bladder
> that he's seen in a long time". Maybe I'm just lucky.
>
> As far as care for the catheter:
> I change my catheter once a month.
> I dress the catheter morning and night. I use a clean washcloth for
> washing and rinsing and drying. I get half the washcloth wet and put soap
> on one corner and wash the SP site with that corner and then rinse it with
> the other corner and dry it with the rest. I put a small amount of
> Silvadene around the site with a sterile Q-tip starting close to the
> catheter and working my way out to about the size of a quarter. We start by
> the catheter and go out so that we don't start away from the catheter and
> bring germs and towards the catheter. After putting on the Silvadene I use
> a 2 x 2 IV sponge (they come to to a package and each one has a slit then
> it) I put one over the SP site from the bottom and the other from the top,
> and then tape the top to my belly with paper tape (about 2 inches long).
>
> I do have a piece of what I call " proud flesh", it's a small piece of
> meat that protrudes by the catheter. Sometimes it's fairly small and
> sometimes it's larger, maybe as large as the small canned pea. It's not
> really a problem but occasionally bleeds now and then. I have had it
> cauterized a couple of times with something like a "soldering gun", but
> that's been years ago and I haven't bothered with it lately.
> I've always had pretty good luck regarding UTIs until about the last 5
> years, but still not too bad.
>
> As far as public events:
> I used to use a bedside bag at night (2000 mL) and a smaller leg bag
> during the day, with an electric valve that I could run few my wheelchair
> to drain the bag. But that started to have some electrical problems along
> with getting plugged. Besides those problems and having to clean the leg
> bag and the night bag each day I just started to using the old night bag
> all day 24/7. Changing the night bag once a week sometimes twice if the
> tubing gets cloudy.
> But what I really like, is that I have a cloth bag and tubing that I
> bought online (I believe it was on eBay, for about $25. It was from a
> individual person that makes them and then sells them. They come in
> different colors but I prefer black, because it tends to blend in to my
> wheelchair.) When I put on a new night bag I run the tubing from the bag
> through the black cloth tube/sock, and then attach the bag to my catheter.
> When getting dressed I run the bag down my pants leg and when I get in the
> chair. On the chair I have the cloth bag hanging behind my foot rests,
> pretty much out of sight except during weight shifts where I recline/tilt.
> Usually these bags come with a slit in the bottom with a Velcro closure on
> it, so instead of taking the night bag out of the cloth bag you can just
> open the bottom and drain it from there. Although I don't recall how long
> the tubing is on my night bag it's long enough that made can drain it into
> the toilet or on the ground. I can usually go all day (draining it at 1
> o'clock when my aide leaves, until 8:30 PM). If you know somebody that
> sews, I would think they're pretty much a piece of cake.
>  PS I don't know that having a bag on 24/7 instead of changing to a leg
> bag morning and night, is any better or worse for you. I would think that
> it may be better because the system stays sealed until you change to a new
> bag. I did mention to my urologist that I was doing the 24/7 thing and he
> seemed fine with it. "But to each his own"
>
> Randy
>
>
> On Tue, May 1, 2018 at 3:36 PM, Eric Olson  wrote:
>
>> Could it be a prostate problem?  An enlarged prostate can make it harder
>> to pass a catheter.  I would think your urologist would have thought of
>> that though.  Supra is nice.  I've had mine over 15 years
>>
>> On Tue, May 1, 2018 at 1:02 PM, RONALD L PRACHT 
>> wrote:
>>
>>> I cant understand how this can change in the matter of a few days but it
>>> did. Im home alone most days and have little help. ive got to keep the
>>> foley in a month, then the deciding starts. Im sure when they pull the
>>> foley that the catherization tube will slip in at first. Will it stay that
>>> way.probally not. Im on Flomax now and oxybutin, im 

Re: [QUAD-L] Need help with options to help catheter go in

[Randy Anderson]

Hello Ron
I am a C4/5 paralyzed from the neck down. I went with the suprapubic about
4 months after my accident, while at rehab.

Your concern about the bladder no longer expanding: I've thought about this
also but have never asked a urologist about it. I've been a quad for 20
years and went to my urologist the 1st part of last month and he said "for
having a catheter as long as I have I've got the best looking bladder that
he's seen in a long time". Maybe I'm just lucky.

As far as care for the catheter:
I change my catheter once a month.
I dress the catheter morning and night. I use a clean washcloth for washing
and rinsing and drying. I get half the washcloth wet and put soap on one
corner and wash the SP site with that corner and then rinse it with the
other corner and dry it with the rest. I put a small amount of Silvadene
around the site with a sterile Q-tip starting close to the catheter and
working my way out to about the size of a quarter. We start by the catheter
and go out so that we don't start away from the catheter and bring germs
and towards the catheter. After putting on the Silvadene I use a 2 x 2 IV
sponge (they come to to a package and each one has a slit then it) I put
one over the SP site from the bottom and the other from the top, and then
tape the top to my belly with paper tape (about 2 inches long).

I do have a piece of what I call " proud flesh", it's a small piece of meat
that protrudes by the catheter. Sometimes it's fairly small and sometimes
it's larger, maybe as large as the small canned pea. It's not really a
problem but occasionally bleeds now and then. I have had it cauterized a
couple of times with something like a "soldering gun", but that's been
years ago and I haven't bothered with it lately.
I've always had pretty good luck regarding UTIs until about the last 5
years, but still not too bad.

As far as public events:
I used to use a bedside bag at night (2000 mL) and a smaller leg bag during
the day, with an electric valve that I could run few my wheelchair to drain
the bag. But that started to have some electrical problems along with
getting plugged. Besides those problems and having to clean the leg bag and
the night bag each day I just started to using the old night bag all day
24/7. Changing the night bag once a week sometimes twice if the tubing gets
cloudy.
But what I really like, is that I have a cloth bag and tubing that I bought
online (I believe it was on eBay, for about $25. It was from a individual
person that makes them and then sells them. They come in different colors
but I prefer black, because it tends to blend in to my wheelchair.) When I
put on a new night bag I run the tubing from the bag through the black
cloth tube/sock, and then attach the bag to my catheter. When getting
dressed I run the bag down my pants leg and when I get in the chair. On the
chair I have the cloth bag hanging behind my foot rests, pretty much out of
sight except during weight shifts where I recline/tilt. Usually these bags
come with a slit in the bottom with a Velcro closure on it, so instead of
taking the night bag out of the cloth bag you can just open the bottom and
drain it from there. Although I don't recall how long the tubing is on my
night bag it's long enough that made can drain it into the toilet or on the
ground. I can usually go all day (draining it at 1 o'clock when my aide
leaves, until 8:30 PM). If you know somebody that sews, I would think
they're pretty much a piece of cake.
 PS I don't know that having a bag on 24/7 instead of changing to a leg bag
morning and night, is any better or worse for you. I would think that it
may be better because the system stays sealed until you change to a new
bag. I did mention to my urologist that I was doing the 24/7 thing and he
seemed fine with it. "But to each his own"

Randy


On Tue, May 1, 2018 at 3:36 PM, Eric Olson  wrote:

> Could it be a prostate problem?  An enlarged prostate can make it harder
> to pass a catheter.  I would think your urologist would have thought of
> that though.  Supra is nice.  I've had mine over 15 years
>
> On Tue, May 1, 2018 at 1:02 PM, RONALD L PRACHT 
> wrote:
>
>> I cant understand how this can change in the matter of a few days but it
>> did. Im home alone most days and have little help. ive got to keep the
>> foley in a month, then the deciding starts. Im sure when they pull the
>> foley that the catherization tube will slip in at first. Will it stay that
>> way.probally not. Im on Flomax now and oxybutin, im hoping that
>> helps.not sure if it will. I don't fully understand why the
>> spincter is spasming or staying closed. I guess I will try anything to get
>> it working, but at some point Im going to have to look into a superpubic. I
>> cant see how a condom cathe could work very well long term, and wont work
>> at all without removing the spincter. I just don't want to make the wrong
>> decision. Ive already 

Re: [QUAD-L] Need help with options to help catheter go in

[Eric Olson]

Could it be a prostate problem?  An enlarged prostate can make it harder to
pass a catheter.  I would think your urologist would have thought of that
though.  Supra is nice.  I've had mine over 15 years

On Tue, May 1, 2018 at 1:02 PM, RONALD L PRACHT 
wrote:

> I cant understand how this can change in the matter of a few days but it
> did. Im home alone most days and have little help. ive got to keep the
> foley in a month, then the deciding starts. Im sure when they pull the
> foley that the catherization tube will slip in at first. Will it stay that
> way.probally not. Im on Flomax now and oxybutin, im hoping that
> helps.not sure if it will. I don't fully understand why the
> spincter is spasming or staying closed. I guess I will try anything to get
> it working, but at some point Im going to have to look into a superpubic. I
> cant see how a condom cathe could work very well long term, and wont work
> at all without removing the spincter. I just don't want to make the wrong
> decision. Ive already screwed up on my syrinx and letting the docs put a
> patch in my stomach after my appendix burst in 2011. I just want to know
> when the smoke clears if the superpubic sucks that I did all I could to
> keep what little life I have rolling. I have very little support guys.
> Thanks for the help.
>
> Ron
>
>
> On Tuesday, May 1, 2018 12:13 PM, Quad Dude  wrote:
>
>
> Hi Ron,
>
> The only 2 alternative solutions I can think of will likely be unappealing
> to you.
>
> Since it appears your bladder sphincter is clamping down too hard, you
> could get a sphincterotomy which debilitates the bladder sphincter and
> allows for the free flow of urine, however, you would need to wear an
> external (condom) catheter from that point forward.
>
> Another possibly more appealing solution could be to get a suprapubic
> catheter placement. This is done through a simple surgical procedure which
> creates a pathway from your abdomen directly to your bladder and your
> bladder would empty through this pathway via a Foley catheter. The side
> benefit of this method of bladder management is it "frees Willie" and can
> make day to day management a bit easier. The procedure is also reversible
> as the passageway from the abdomen to your bladder will close on its own
> over a relatively short period of time (multiple hours or days) if you
> remove the Foley catheter.
>
> These may have already been discussed with your urologist. I definitely
> encourage getting 2nd opinions before opting for any surgical procedures,
> urology or otherwise.
>
> I hope you find an acceptable solution that works for you.
>
> Steve - C4, 30 years, auto accident
>
> On Tue, May 1, 2018 at 4:37 AM, RONALD L PRACHT 
> wrote:
>
> Im a c7 quad, 20 years post that has been straight cathing for 20 years
> with little issue. Three years ago I started leaking a bit but just dealt
> with it until the tubes wouldn't go in( pass sphincter) without an hour of
> pushing and sometimes 5 tries. 3 months ago things got so bad that my
> bladder was full and I couldn't insert the tube at all and my body went
> into severe autonomic dysreflexia. I was taken by ambulance to the hospital
> and they inserted a foley for 3 weeks. After the foley was taken out they
> gave me some antibiotics and the tube was slipping in like butter for the
> next 8 days. Out of nowhere the tube started getting harder and harder to
> get in until it was near impossible. I was put on that drug that stops or
> decreases bladder spasms back at the urologist visit after the emergency
> room deal. Went back to the urologist today and they had to give me the
> nurse, she tried to run a cathe tube in me but it wouldn't go so she tried
> a caude cathe tube with the bent tip. this got through and urine came out
> but lots of blood came out as well which never has happened. Finally the
> doc came in and tried to get a foley in and finally did after awhile. The
> blood wasn't coming from the bladder, it must have knicked a wall. My last
> urologist visit they ran a camera in and it looked great no false passage
> or issues. The question is why is the tube not getting past the internal
> spincter? I suggested trying Flomax and im already on oxybutynin. if there
> is no blockage or false passage then the spincter has to be in spasm or not
> opening right? What else should I do? I have this foley now for a month
> that I didn't want but I got anyway. I guess if I take the Flomax and
> oxybutynin and after the four weeks remove the foley and im sure the tube
> will go in but within a week it might start giving me trouble again. I
> don't really understand how the spincter could give me this much trouble
> and if it is what else I can do. I fear that im going to get a permanent
> bag soon because they are tired of me. maybe they can rescope me to be sure
> next time as wellim at a loss.
>
>
> Ron
>
>
>
>
>

Re: [QUAD-L] Need help with options to help catheter go in

[RONALD L PRACHT]

I appreciate you boys giving me input. I will repay the favor. When one of you 
gets a free moment could you give me a basic rundown of the upkeep of a 
superpubic? Basic things and probs Im going to run into. When you hook up a bag 
to your bladder and it doesn't expand anymore...is that an issue? 
The truth is a superpubic may actually improve my life. ive never been able to 
go to any weddings or family events straight cathing because I couldn't wear a 
suit cause I had to wear slip on pants to access myself to cathe . Family 
events were always a no because I couldn't get in the bathroom . With a 
superpubic I may be able to attend my first event without planning like its a 
vacation. Ive wanted to go to a racetrack event but friends wont go with me due 
to the straight cathing situation. with a bag I could go most of the day and 
drain it in the grass, lol.
Ron 

On Tuesday, May 1, 2018 1:33 PM, Greg  wrote:
 

  Ask your doc, but I think if  you dont like the Suprapubic, you can just take 
it out.
 Greg
 
 
 On 5/1/2018 11:02 AM, RONALD L PRACHT wrote:
  
 
 I cant understand how this can change in the matter of a few days but it did. 
Im home alone most days and have little help. ive got to keep the foley in a 
month, then the deciding starts. Im sure when they pull the foley that the 
catherization tube will slip in at first. Will it stay that 
way.probally not. Im on Flomax now and oxybutin, im hoping that 
helps.not sure if it will. I don't fully understand why the 
spincter is spasming or staying closed. I guess I will try anything to get it 
working, but at some point Im going to have to look into a superpubic. I cant 
see  how a condom cathe could work very well long term, and wont work at all 
without removing the spincter. I just don't want to make the wrong decision. 
Ive already screwed up on my syrinx and letting the docs put a patch in my 
stomach after my appendix burst in 2011. I just want to know when the  smoke 
clears if the superpubic sucks that I did all I could to keep what little life 
I have rolling. I have very little support guys. Thanks for the help.  
  Ron 
 
  On Tuesday, May 1, 2018 12:13 PM, Quad Dude  wrote:
  
 
 Hi Ron, 
  The only 2 alternative solutions I can think of will likely be unappealing to 
you. 
  Since it appears your bladder sphincter is clamping down too hard, you could 
get a sphincterotomy which debilitates the bladder  sphincter and allows for 
the free flow of urine, however, you would need to wear an external (condom) 
catheter from that point forward. 
  Another possibly more appealing solution could be to get a suprapubic 
catheter placement. This is done through a simple surgical procedure which 
creates a pathway from your abdomen directly to your bladder and your bladder 
would empty through this pathway via a Foley catheter. The side benefit of this 
method of bladder management is it "frees Willie" and can make day  to day 
management a bit easier. The procedure is also reversible as the passageway 
from the abdomen to your bladder will close on its own over a relatively short 
period of time (multiple hours or days) if you remove the Foley catheter. 
  These may have already been discussed with your urologist. I definitely 
encourage getting 2nd opinions before opting for any surgical procedures, 
urology or otherwise. 
  I hope you find an acceptable solution that works for you. 
  Steve - C4, 30 years, auto accident   
 On Tue, May 1, 2018 at 4:37 AM, RONALD L PRACHT  wrote:
 
Im a c7 quad, 20 years post that has been straight cathing for 20 years 
with little issue. Three years ago I started leaking a bit but just dealt with 
it until the tubes wouldn't go  in( pass sphincter) without an hour of pushing 
and sometimes 5 tries. 3 months ago things got so bad that my bladder was full 
and I couldn't insert the tube at all and my body went into  severe autonomic 
dysreflexia. I was taken by ambulance to the hospital and they inserted a foley 
for 3 weeks. After the foley was taken out they gave me some antibiotics and 
the tube  was slipping in like butter for the next 8 days. Out of nowhere the 
tube started getting harder and harder to get in until it was near impossible. 
I was put on that drug that stops or  decreases bladder spasms back at the 
urologist visit after the emergency room deal. Went back to the urologist today 
and they had to give  me the nurse, she tried to run a cathe tube in me but it 
wouldn't go so she tried a caude cathe tube with the bent tip. this got through 
and urine came out but lots of blood came out as well  which never has 
happened. Finally the doc came in and tried to get a foley in and finally did 
after awhile. The blood wasn't coming from the bladder, it must have knicked a 
wall. My last  urologist visit they ran a camera in and it looked great no 
false passage or issues. The question 

Re: [QUAD-L] Need help with options to help catheter go in

[RONALD L PRACHT]

I cant understand how this can change in the matter of a few days but it did. 
Im home alone most days and have little help. ive got to keep the foley in a 
month, then the deciding starts. Im sure when they pull the foley that the 
catherization tube will slip in at first. Will it stay that 
way.probally not. Im on Flomax now and oxybutin, im hoping that 
helps.not sure if it will. I don't fully understand why the 
spincter is spasming or staying closed. I guess I will try anything to get it 
working, but at some point Im going to have to look into a superpubic. I cant 
see how a condom cathe could work very well long term, and wont work at all 
without removing the spincter. I just don't want to make the wrong decision. 
Ive already screwed up on my syrinx and letting the docs put a patch in my 
stomach after my appendix burst in 2011. I just want to know when the smoke 
clears if the superpubic sucks that I did all I could to keep what little life 
I have rolling. I have very little support guys. Thanks for the help. 
Ron 

On Tuesday, May 1, 2018 12:13 PM, Quad Dude  wrote:
 

 Hi Ron,
The only 2 alternative solutions I can think of will likely be unappealing to 
you.
Since it appears your bladder sphincter is clamping down too hard, you could 
get a sphincterotomy which debilitates the bladder sphincter and allows for the 
free flow of urine, however, you would need to wear an external (condom) 
catheter from that point forward.
Another possibly more appealing solution could be to get a suprapubic catheter 
placement. This is done through a simple surgical procedure which creates a 
pathway from your abdomen directly to your bladder and your bladder would empty 
through this pathway via a Foley catheter. The side benefit of this method of 
bladder management is it "frees Willie" and can make day to day management a 
bit easier. The procedure is also reversible as the passageway from the abdomen 
to your bladder will close on its own over a relatively short period of time 
(multiple hours or days) if you remove the Foley catheter.
These may have already been discussed with your urologist. I definitely 
encourage getting 2nd opinions before opting for any surgical procedures, 
urology or otherwise.
I hope you find an acceptable solution that works for you.
Steve - C4, 30 years, auto accident
On Tue, May 1, 2018 at 4:37 AM, RONALD L PRACHT  wrote:

 Im a c7 quad, 20 years post that has been straight cathing for 20 years with 
little issue. Three years ago I started leaking a bit but just dealt with it 
until the tubes wouldn't go in( pass sphincter) without an hour of pushing and 
sometimes 5 tries. 3 months ago things got so bad that my bladder was full and 
I couldn't insert the tube at all and my body went into severe autonomic 
dysreflexia. I was taken by ambulance to the hospital and they inserted a foley 
for 3 weeks. After the foley was taken out they gave me some antibiotics and 
the tube was slipping in like butter for the next 8 days. Out of nowhere the 
tube started getting harder and harder to get in until it was near impossible. 
I was put on that drug that stops or decreases bladder spasms back at the 
urologist visit after the emergency room deal. Went back to the urologist today 
and they had to give me the nurse, she tried to run a cathe tube in me but it 
wouldn't go so she tried a caude cathe tube with the bent tip. this got through 
and urine came out but lots of blood came out as well which never has happened. 
Finally the doc came in and tried to get a foley in and finally did after 
awhile. The blood wasn't coming from the bladder, it must have knicked a wall. 
My last urologist visit they ran a camera in and it looked great no false 
passage or issues. The question is why is the tube not getting past the 
internal spincter? I suggested trying Flomax and im already on oxybutynin. if 
there is no blockage or false passage then the spincter has to be in spasm or 
not opening right? What else should I do? I have this foley now for a month 
that I didn't want but I got anyway. I guess if I take the Flomax and 
oxybutynin and after the four weeks remove the foley and im sure the tube will 
go in but within a week it might start giving me trouble again. I don't really 
understand how the spincter could give me this much trouble and if it is what 
else I can do. I fear that im going to get a permanent bag soon because they 
are tired of me. maybe they can rescope me to be sure next time as 
wellim at a loss.

Ron



   

Re: [QUAD-L] Need help with options to help catheter go in

[Quad Dude]

Hi Ron,

The only 2 alternative solutions I can think of will likely be unappealing
to you.

Since it appears your bladder sphincter is clamping down too hard, you
could get a sphincterotomy which debilitates the bladder sphincter and
allows for the free flow of urine, however, you would need to wear an
external (condom) catheter from that point forward.

Another possibly more appealing solution could be to get a suprapubic
catheter placement. This is done through a simple surgical procedure which
creates a pathway from your abdomen directly to your bladder and your
bladder would empty through this pathway via a Foley catheter. The side
benefit of this method of bladder management is it "frees Willie" and can
make day to day management a bit easier. The procedure is also reversible
as the passageway from the abdomen to your bladder will close on its own
over a relatively short period of time (multiple hours or days) if you
remove the Foley catheter.

These may have already been discussed with your urologist. I definitely
encourage getting 2nd opinions before opting for any surgical procedures,
urology or otherwise.

I hope you find an acceptable solution that works for you.

Steve - C4, 30 years, auto accident

On Tue, May 1, 2018 at 4:37 AM, RONALD L PRACHT 
wrote:

> Im a c7 quad, 20 years post that has been straight cathing for 20 years
> with little issue. Three years ago I started leaking a bit but just dealt
> with it until the tubes wouldn't go in( pass sphincter) without an hour of
> pushing and sometimes 5 tries. 3 months ago things got so bad that my
> bladder was full and I couldn't insert the tube at all and my body went
> into severe autonomic dysreflexia. I was taken by ambulance to the hospital
> and they inserted a foley for 3 weeks. After the foley was taken out they
> gave me some antibiotics and the tube was slipping in like butter for the
> next 8 days. Out of nowhere the tube started getting harder and harder to
> get in until it was near impossible. I was put on that drug that stops or
> decreases bladder spasms back at the urologist visit after the emergency
> room deal. Went back to the urologist today and they had to give me the
> nurse, she tried to run a cathe tube in me but it wouldn't go so she tried
> a caude cathe tube with the bent tip. this got through and urine came out
> but lots of blood came out as well which never has happened. Finally the
> doc came in and tried to get a foley in and finally did after awhile. The
> blood wasn't coming from the bladder, it must have knicked a wall. My last
> urologist visit they ran a camera in and it looked great no false passage
> or issues. The question is why is the tube not getting past the internal
> spincter? I suggested trying Flomax and im already on oxybutynin. if there
> is no blockage or false passage then the spincter has to be in spasm or not
> opening right? What else should I do? I have this foley now for a month
> that I didn't want but I got anyway. I guess if I take the Flomax and
> oxybutynin and after the four weeks remove the foley and im sure the tube
> will go in but within a week it might start giving me trouble again. I
> don't really understand how the spincter could give me this much trouble
> and if it is what else I can do. I fear that im going to get a permanent
> bag soon because they are tired of me. maybe they can rescope me to be sure
> next time as wellim at a loss.
>
>
> Ron
>

Re: [QUAD-L] Need help with options to help catheter go in

[Danny Hearn]

I'm surprised you made it 20 years of straight cathing Ron, I only made it 
about 3 years and had to get a supra-pubic indwelling catheter. I was getting 
blockage and bleeding and hard to get in alsonot sure what's causing your 
issues but hope it works our for you Ron.  Dan H*** 

On Tuesday, May 1, 2018 3:37 AM, RONALD L PRACHT  
wrote:
 

  Im a c7 quad, 20 years post that has been straight cathing for 20 years with 
little issue. Three years ago I started leaking a bit but just dealt with it 
until the tubes wouldn't go in( pass sphincter) without an hour of pushing and 
sometimes 5 tries. 3 months ago things got so bad that my bladder was full and 
I couldn't insert the tube at all and my body went into severe autonomic 
dysreflexia. I was taken by ambulance to the hospital and they inserted a foley 
for 3 weeks. After the foley was taken out they gave me some antibiotics and 
the tube was slipping in like butter for the next 8 days. Out of nowhere the 
tube started getting harder and harder to get in until it was near impossible. 
I was put on that drug that stops or decreases bladder spasms back at the 
urologist visit after the emergency room deal. Went back to the urologist today 
and they had to give me the nurse, she tried to run a cathe tube in me but it 
wouldn't go so she tried a caude cathe tube with the bent tip. this got through 
and urine came out but lots of blood came out as well which never has happened. 
Finally the doc came in and tried to get a foley in and finally did after 
awhile. The blood wasn't coming from the bladder, it must have knicked a wall. 
My last urologist visit they ran a camera in and it looked great no false 
passage or issues. The question is why is the tube not getting past the 
internal spincter? I suggested trying Flomax and im already on oxybutynin. if 
there is no blockage or false passage then the spincter has to be in spasm or 
not opening right? What else should I do? I have this foley now for a month 
that I didn't want but I got anyway. I guess if I take the Flomax and 
oxybutynin and after the four weeks remove the foley and im sure the tube will 
go in but within a week it might start giving me trouble again. I don't really 
understand how the spincter could give me this much trouble and if it is what 
else I can do. I fear that im going to get a permanent bag soon because they 
are tired of me. maybe they can rescope me to be sure next time as 
wellim at a loss.

Ron

   

[QUAD-L] Need help with options to help catheter go in

[RONALD L PRACHT]

 Im a c7 quad, 20 years post that has been straight cathing for 20 years with 
little issue. Three years ago I started leaking a bit but just dealt with it 
until the tubes wouldn't go in( pass sphincter) without an hour of pushing and 
sometimes 5 tries. 3 months ago things got so bad that my bladder was full and 
I couldn't insert the tube at all and my body went into severe autonomic 
dysreflexia. I was taken by ambulance to the hospital and they inserted a foley 
for 3 weeks. After the foley was taken out they gave me some antibiotics and 
the tube was slipping in like butter for the next 8 days. Out of nowhere the 
tube started getting harder and harder to get in until it was near impossible. 
I was put on that drug that stops or decreases bladder spasms back at the 
urologist visit after the emergency room deal. Went back to the urologist today 
and they had to give me the nurse, she tried to run a cathe tube in me but it 
wouldn't go so she tried a caude cathe tube with the bent tip. this got through 
and urine came out but lots of blood came out as well which never has happened. 
Finally the doc came in and tried to get a foley in and finally did after 
awhile. The blood wasn't coming from the bladder, it must have knicked a wall. 
My last urologist visit they ran a camera in and it looked great no false 
passage or issues. The question is why is the tube not getting past the 
internal spincter? I suggested trying Flomax and im already on oxybutynin. if 
there is no blockage or false passage then the spincter has to be in spasm or 
not opening right? What else should I do? I have this foley now for a month 
that I didn't want but I got anyway. I guess if I take the Flomax and 
oxybutynin and after the four weeks remove the foley and im sure the tube will 
go in but within a week it might start giving me trouble again. I don't really 
understand how the spincter could give me this much trouble and if it is what 
else I can do. I fear that im going to get a permanent bag soon because they 
are tired of me. maybe they can rescope me to be sure next time as 
wellim at a loss.

Ron