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Staff member
Hello!
My name is Ahiru (which means
Duck in Japanese. It's one
Of my nicknames.
I live in Colorado with my
2 dogs.
I have multiple chronic, rare,
And life limiting illnesses.
I was diagnosed with Neurogenic Bladder in 2012, but have had indwelling catheters for six or
So months for a few years prior to that. I was able to control
My neurogenic bladder (which has both st times been frequency
And leaky and st times have dealt
With retention.
I trained my bladder to go on a schedule and overtime I began
Having more issues with retention.
In 2014 or 2015 I can't remember.
I had a surgery done and
A common reaction from anastetic can be urindry
Retention. The nurses realized so hadn't urinsted in over 8 hours. So they did a bladder scan.
There was 1600ml of urine in
My bladder and I couldn't even feel it. So they straight catches me. By the third time in one
Shift if straight csthing, my skin was so swollen that none of
The nurses could get the Cath
In. So the urologist who is now
My urologist came in and decided to let it be left in. On that shift alone so retended over
3000ml of ursine in one 8 hour
Shift. I was sent home with an
Indwelling foley and saw the PA. At that point I should have been
Able to go. No going. So we
Inserted a new indwelling
Catheter and I saw my urologist amonth later.
He explained he'd gone through all of my records and unfortunately
My bladder has lost too
Many nerves to be functional. So I opted to get a Supra pubic catheter placed (irithral carheters
Have cause stretched out euryhrs and scaring and I am not a candidate for self cathing.
We believe the cause of my neurogenic bladder is due to
Auto mic dysfunction whic means disregulstoon of the autonomic nervous system. So I could have
Trouble with any body system that does
Not take conscious effort. And I do have a severe case of autonomic dysfunction.
Neurogenic bladder is one
If my symptoms.
The first six or so months after placement went great. And then so began having horrific spasms and
Contestant pain.
My urologist said "anytime you have a foreign object in your body you will have pain and infection."
I have several other medical tubes and they don't hurt! I disagree with the fact that pain is normal.
Especially considering I have had it an entire year.
I spend most all day in bed because thstcid the most comfortable
Position for me. I don't like
Missing out on family get together and such. The more active I am the more bladder spasms I have.
I do take gelnique which is a gel form of oxybutton. But it doesn't
Do much.
I really think there must be
A better answer then this. And catheter change outs are every three weeks and they hurt quite a bit.
we've done ct scans,MRI and laparoscopic surgery. There was thickening if the bladder wall
Common inneurogenic bladder and
Some irritation from the balloon in
The cstheter.
I am a complex patient and all
Of my meds must be either be in a gel or cream, patch or IV.
I am curious about partial or total bladder removal and a urodtomy.
My quality of life is not where so know it can be, I realize bladder removal is drastic and a big surgery, but I honestly can't stand this pain any more.
No one should have this kind of pain for a year!
My concerns besides infection risk are phantom pain.
I have a central line (IV line) in my chest for 24/7 IV fluids and TPzn (IV nutrition). My digestive
Tract is paralyzed so so also have a g tube (low) profile to let the bile build up from my liver because my intestinges like to
Go backward. And the tube allows me to drain the extra fluid which causes pain bloating and nausea.
I have been sick for 12 years. There is no cure. But Zi don't
Feel we've turned over every stone.
8 am working on getting into a
Pain specialist and we are talking about doing an intradinal pain pump
But I'm concerned another "foreignobject" for bacteria etc to travel to.
I have gotten so sick that bacteria have moved from one area and gotten into my blood stream. This is a syndrome caked bacteremia (in early stages and sepsis in later ones.
2 if the 4 times I've been septic were lead back to the SP catheter and UTzi of which I don't
Feel the symptoms of until they are fairly advanced.
It's so hard to find info on all of this.
Hoping for answers here.
Now for the about me type stuff. I have been and will always be a
Teacher. Even if I don't have a classroom! I love to read
Write and draw. I love Japanese pop culture including j-pop music (specifically Momoiro Clover Z you may know of them if you've watched Sailor Moon Crystal). I love watching anime and reading Manga as well.
Nice to meet everyone and I am open to questions
Wanted to add more tags but could not.
Ahiru
There is always Hope
My name is Ahiru (which means
Duck in Japanese. It's one
Of my nicknames.
I live in Colorado with my
2 dogs.
I have multiple chronic, rare,
And life limiting illnesses.
I was diagnosed with Neurogenic Bladder in 2012, but have had indwelling catheters for six or
So months for a few years prior to that. I was able to control
My neurogenic bladder (which has both st times been frequency
And leaky and st times have dealt
With retention.
I trained my bladder to go on a schedule and overtime I began
Having more issues with retention.
In 2014 or 2015 I can't remember.
I had a surgery done and
A common reaction from anastetic can be urindry
Retention. The nurses realized so hadn't urinsted in over 8 hours. So they did a bladder scan.
There was 1600ml of urine in
My bladder and I couldn't even feel it. So they straight catches me. By the third time in one
Shift if straight csthing, my skin was so swollen that none of
The nurses could get the Cath
In. So the urologist who is now
My urologist came in and decided to let it be left in. On that shift alone so retended over
3000ml of ursine in one 8 hour
Shift. I was sent home with an
Indwelling foley and saw the PA. At that point I should have been
Able to go. No going. So we
Inserted a new indwelling
Catheter and I saw my urologist amonth later.
He explained he'd gone through all of my records and unfortunately
My bladder has lost too
Many nerves to be functional. So I opted to get a Supra pubic catheter placed (irithral carheters
Have cause stretched out euryhrs and scaring and I am not a candidate for self cathing.
We believe the cause of my neurogenic bladder is due to
Auto mic dysfunction whic means disregulstoon of the autonomic nervous system. So I could have
Trouble with any body system that does
Not take conscious effort. And I do have a severe case of autonomic dysfunction.
Neurogenic bladder is one
If my symptoms.
The first six or so months after placement went great. And then so began having horrific spasms and
Contestant pain.
My urologist said "anytime you have a foreign object in your body you will have pain and infection."
I have several other medical tubes and they don't hurt! I disagree with the fact that pain is normal.
Especially considering I have had it an entire year.
I spend most all day in bed because thstcid the most comfortable
Position for me. I don't like
Missing out on family get together and such. The more active I am the more bladder spasms I have.
I do take gelnique which is a gel form of oxybutton. But it doesn't
Do much.
I really think there must be
A better answer then this. And catheter change outs are every three weeks and they hurt quite a bit.
we've done ct scans,MRI and laparoscopic surgery. There was thickening if the bladder wall
Common inneurogenic bladder and
Some irritation from the balloon in
The cstheter.
I am a complex patient and all
Of my meds must be either be in a gel or cream, patch or IV.
I am curious about partial or total bladder removal and a urodtomy.
My quality of life is not where so know it can be, I realize bladder removal is drastic and a big surgery, but I honestly can't stand this pain any more.
No one should have this kind of pain for a year!
My concerns besides infection risk are phantom pain.
I have a central line (IV line) in my chest for 24/7 IV fluids and TPzn (IV nutrition). My digestive
Tract is paralyzed so so also have a g tube (low) profile to let the bile build up from my liver because my intestinges like to
Go backward. And the tube allows me to drain the extra fluid which causes pain bloating and nausea.
I have been sick for 12 years. There is no cure. But Zi don't
Feel we've turned over every stone.
8 am working on getting into a
Pain specialist and we are talking about doing an intradinal pain pump
But I'm concerned another "foreignobject" for bacteria etc to travel to.
I have gotten so sick that bacteria have moved from one area and gotten into my blood stream. This is a syndrome caked bacteremia (in early stages and sepsis in later ones.
2 if the 4 times I've been septic were lead back to the SP catheter and UTzi of which I don't
Feel the symptoms of until they are fairly advanced.
It's so hard to find info on all of this.
Hoping for answers here.
Now for the about me type stuff. I have been and will always be a
Teacher. Even if I don't have a classroom! I love to read
Write and draw. I love Japanese pop culture including j-pop music (specifically Momoiro Clover Z you may know of them if you've watched Sailor Moon Crystal). I love watching anime and reading Manga as well.
Nice to meet everyone and I am open to questions
Wanted to add more tags but could not.
Ahiru
There is always Hope
