WOW, LORI....YOU 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 <[email protected]>
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 <[email protected]> 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 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
--
"Petting, scratching and cuddling a dog could be soothing to the mind and heart
and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
