Wow, Lori...I sure feel for you and my other quad friends that all experience
hard times and many like you don't have family close to help them...I have been
having severe spasms at night, my urologist gave me antibiotics for a while
then had me come into his office and checked for bladder stones, but he said
bladder was clear and looking good yesterday. He said ask my family doc to
check my kidney number counts by a blood work test because he don't always
check or scan them unless he suspects something. I do have a syrinx also and
get crazy bad pain in my spine a lot, so not sure if that is the cause but
other than the spasms mostly at night most things are Okay...I tried baclofen
(spelling ) years back but never had much spasm troubles before..you guys are
always in our prayers, try to stay strong because really we don't have much
choice....my bladder got blockage called stricters 3 years into being a quad
and I had to go to a super-pubic indwelling cath...me and wife love it because
we empty the bag at morning then at night...she said this helped her a lot and
instead of cathing 3 times a day she only changes the catheter and bag every 4
or 5 weeks. Good luck ! Dan H*** 18.5 years as a quad, car
accident...St.Louis, Mo. Area.
On Thursday, May 12, 2016 11:37 PM, Lori Michaelson
<[email protected]> wrote:
Greg... so do you now have both a catheter AND a colostomy? I know of 2
members on the quad list who have had that procedure done whereby I THINK it is
called an ileostomy whereby a part of the bowel is taken to urinate through.
But they both said that it took a LONG LONG time to recover from that
surgery.Over the last 2 to 3 weeks I have been having a terrible terrible time
(like never before in my life), whereby my catheter is almost always leaking
urine around it. This did not happen over a period of time (months, etc.) .
Otherwise I would buy into the "As you get older... things change...." This
just began in April and actually was originally gotten worse by the first nurse
who came to my home from a home health agency waltzing in and not even saying
hello and inflating the bulb in my urethra stretching my urethra. Ironically,
it was OK for three weeks after that and the next catheter change was done by a
great nurse. But that is when it truly began. But what is going on now (and
started a little over two weeks ago) is simply unacceptable. And of course
detrimental to skin breakdown, by sitting in wetness during the day. Prior to
just a couple weeks ago I was not having bladder pain. Or this 24-hour
wetness.Of all times for my urologist (who knows my body best and has since
2006) be be on vacation, as well as her regular nurse. I have had a specimen
taken about 4 weeks now as I write this but incompetence out there running
rampant... I kept calling for the results from my urologist office and my home
health agency that took it to the lab and they both kept saying that they could
not get the results... this went on and on every week I would call with
everyone saying "haven't gotten no results yet." I finally absolutely I asked a
nurse who came out to change my catheter (who was a breath of fresh air
compared to the nurse I was assigned to when I signed up with this agency and
wanted to discharge me. Earlier this week... for no reason except she felt
threatened by me. When I didn't do anything to her.) LONG LONG STORY. The home
health agency finally got the results by this nice nurse calling the lab when
she was here and getting them right away. After that, they said they sent the
results of while ago to my urologist's office but my urologist office staff
kept saying that they still had not gotten the results. They were throwing the
blame back and forth and back and forth and back and forth as to who was
getting the results OR NOT GETTING THE RESULTS. It was insanity!So, back when
that urine specimen was taken I was not having the current problems that I am
now or the bladder pain. My urologist Dr. on call (another urologist in her
office) was very cold to me and just told me that I had to wait until my doctor
got back into town. In the meantime I have had to pop ibuprofen every day to
her three times a day and that is not good and I have never ever had to do that
before. Something is wrong and they need to have my urologist call me directly
because she has no idea. All this is going on with me. Her current "medical
assistant" is just a laissez-faire attitude and says she is going to give all
the messages to my doctor. But she said that before my doctor even when on
vacation.I feel like in the middle of a Stephen King novel of the darkest kind,
and this can't possibly be happening! Even when I have had UTIs over the last
36+ years... I have never had leaking around my catheter. Further, I am
building a sediment like no tomorrow and can barely make it a week without
needing my catheter changed because they get so clogged near the tip of the
catheter bulb. My urologist also does not know that either.My urologist has
removed bladder stones twice in my 10 year history with her. Once in 2006 when
I had a bunch of big ones. But no leaking and only having fevers to be finally
checked for a type of UTI, which I had. The last time she removed the bladder
stones from me (10 of them) was soon after my husband passed away. And they
were removed in August of 2012. Although my husband was still alive to take me
to get pelvic CT scan showing the stones and planned on going with me again to
have them removed by neither he or I had ANY idea he was going to die) and my
bladder was in perfect shape then. Soon after moving back to Tucson Arizona. I
had another pelvic CT scan so she could get an updated view of my kidneys,
ureter and bladder even though I had just had one in September of 2015. She
only found two tiny bladder stones, and she said it could even be one bladder
stone, which was very little for me compared to my past and, at that time in
March or early April of this year... none of this was going on. Further, the
last two times she had been in my bladder. She told me that my bladder "looked
like a bladder that never had a catheter in it." Despite me having a Foley
catheters since October 1979.So everything was cool until just recently and
after that nurse stretched my urethra originally. This is driving me crazy
because I used to ALWAYS know when my catheter was leaking. In fact, it was the
strongest feeling I ever get whenever my catheter is kinked in any way, shape
or form -- prior to recently (just a little little over 2 weeks ago. Now I have
no idea that it is leaking around it. I called the SCI hotline last week I
spoke to a nurse that she had no idea what was going on. Or could be going on
either. There is no rhyme or reason to this in any way. I just can't wait until
I can see my urologist! ANOTHER urine specimen was taken this past Tuesday by
my home health agency. So my urologist should get this updated specimen and
culture results when she gets back on Monday or this coming week. This is so
beyond unusual for me that it is so far out of the ballpark of what I know
about my body for 36 1/2 years.I used to easily be able to bury and instill my
bladder for years and be able to hold it until I felt like I had to urinate and
this was to cut down on any sediment. Now, it just drools around my Foley
catheter without me knowing about it. So weird for me!!! I am also scared. My
urologist, back in March or early April, said she was not really exactly
comfortable going up to look in my bladder because that would take instruments
up in there unnecessarily so (since nothing was going on at that time). She
said I could make another appointment six months from then. LITTLE DID HER OR I
KNOW all hell was going to break loose. She also knows that I can't get up on
the table to be able to examine me that way (for numerous reasons), and she
would have to see me in the ER, which we want to avoid at all costs. I feel
like there has been a black cloud hanging over me since I was a kid. I lost my
father when I was only 13, had my accident when I turned 15, and then lost my
mother to terminal pancreatic cancer 6 months after coming home from the
hospital 13 consecutive months, because I was in such bad shape back in 1979. I
feel fortunate to have two great relationships with two great guys. Although,
easily in hindsight, my husband of 15 years before his death was BY FAR am I
compared to my ex-common-law husband. My common-law husband and I were very
compatible and he was a primary area. To me except for private pay after I
started working at not being eligible for home health care back then. [Between
1998 and 1994 when I had to stop working after being diagnosed with
syringomyelia and having my endurance and pain quadruple. But even more than
that, with it taking 4 1/2 years to get diagnosed with that awful condition. It
supposedly only happens to about 3 or 4% of the SCI population... so, lucky me
after everything else I've gone through in my life. Despite this... my husband
to be (whom I met on the Internet) asked me to marry him back when I was 33.
That was before I started having back-to-back UTIs and the wound of a century
which had nothing to do with our marriage or any activity in that regard. The
UTIs that I had began in the year 2000 were all systemic and did not stop until
I had the bladder stones removed in 2006. I have not had any fevers. Since
then, even though I have the same pathogenic bacteria in my urine/bladder that
simply will not go away and my urologist knows this because, when they came
back again in late 2011 she tried treating it with IV appropriate for that
pathogenic bacteria, removing the bladder stones that were present. In doing a
gentamicin wash directly into the bladder. The sediment came back with a
vengeance after all of that. It still shows up in my urine specimens, but the
only thing that causes this sediment buildup and that is getting worse every
week now. I have no idea what she will suggest when she comes back. I so wish
my husband will live because him and my urologist here in Arizona used to get
together to talk about different bacterium, because he had been a chief medical
technologist back in the early 1970s, went to medical school and retained
everything he learned I was like a second physician for me and saved my life on
numerous occasions my lab results were wrong, and he could see that clearly and
why.Losing my husband caused me to have "Psychogenic non-epileptic seizures."
It was just too much trauma for me since he was everything to me. I have very
little family left. These seizures have continued because they are triggered by
periods/a day of great stress, pain or exhaustion, and that has happened
numerous times since my husband's death. I was first put on "seizure
medication" but later learned that these type of seizures are only caused by
stress, pain or exhaustion or all of the above so the seizure medication that I
was put on when they continued after my husband's death really doesn't do
anything but I am afraid to go off of it as well.*Huge sigh*~Lori
On Thu, May 12, 2016 at 7:04 PM, nichole rohling <[email protected]>
wrote:
I am soooooooooooo leaning that way and your response just helps me lean that
way a little more. Did you rule out other issues such as gall bladder, pancreas
before you took the leap? Nicki From: greg [mailto:[email protected]]
Sent: Thursday, May 12, 2016 5:18 PM
To: nichole rohling
Subject: Re: [QUAD-L] Bowel Problems / Syrinx I was having lots of issues, some
of that, some leakage, etc. I decided just to bag the whole idea So To Speak.
Colostomy. My only complant is that I didn't do it 45 years ago. Sooooooooo
much nicer, faster, less stress, less embarassing, Greg> I was having issues
last fall with having to call my caregiver to> come and get me on my shower
chair about 2 hrs after I would get in> bed. I would have diarrhea or very
loose stools.> > Dr. started me on a probiotic and it did help. Only had to
call> caregiver once from November to last Thursday. I had to call> Thursday
night, Sat, Sun and last night (I took lomotil Monday and> didn’t have to call
Mon or Tues)> > I called Craig’s nurse hotline and she gave me several>
possibilities as to what we need to check.> > Syrinx was 1 of them ad I have
been having a very odd excruciating> pain in my shoulder joints.> > Anyone with
a syrinx experience bowel issues? Or anyone experience> bowel issues like I
am.> > We’ll be checking a number of other things too but just asking for>
others’ thoughts, experiences.> > > Nicki
--
"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
