Re: Ditropan help- Thanks!

[Guest guest]

Hi

I take the generic form of Ditropan (it just isn't time released so I take two

pills a day vs. 1 - but I save a lot of money...)

Without Ditropan, even with a neurogenic bladder that won't empty on demand if

my life depended on it (been self-cathing for about eight/nine years), my

bladder will still leak without the Ditropan. It's the one prescription that I

still forget to refill when it gets low and I always regret it - I leak and leak

without it. Strange huh? At any rate, I don't have any side-effects from it -

or if I do they're so muddled into the side-effects of the other meds that I'm

on that I don't notice them.

What are your worries with this med? Are there effects from it that I'm not

aware of?

Kathy

Ditropan help- Thanks!

Hello-

Just wanted to thank everyone for their Ditropan responses. I am learning a

lot and still gearing up regarding 'what to do next.' There are things you

suggested that I didn't even think of/know about so thank you. Feel free to

continue the Ditropan/bladder topic as it is helping me figure things out. When

you have a child with so many issues, you have to post on a few networks and

then combine all the responses (for HIrshsprungs, TC, dandy-walker cyst...) I'll

let you know what ends up happening. Still haven't started him on it yet- but

have ordered supplies for cathing, rigged a changing table for it and have the

Ditropan in the cupboard. On your mark, get set, ....

Blessings,

Debbie & Ben 3 1/2 yrs. (Down Syndrome, Hirschsprungs Disease, hydrocephalus

with VP shunt & large posterior fossa cyst pending surgery on June 27th, fatty

filum with possible tethered cord and recently urodynamics testing showing

bladder spasms, gallstones, left-sided hemiplegia, visually impaired)

---------------------------------

Got a little couch potato?

Check out fun summer activities for kids.

[Guest guest]

Hi

I was put on ditropan (generic brand too) and my urologist said it would

paralyse the bladder so I couldn't pee on my own and would HAVE to cath.

Well I can still go on my own, but it is just as difficult as it was

before I started. I never have been a leaker myself however. Durring

urodynamics, the testing part where they have you bare down almost like

your giving birth,lol, to see if you'd leak ...... well as full as I was

I didn't spill a drop lol. I haven't noticed any side effects from it

myself. But like others here, I too am on other meds so I am not sure I

would notice, unless it was a sever reaction. Whatever you decide I wish

you and your son luck with his upcoming surgery.

Eleanor

>

> Hi

>

> I take the generic form of Ditropan (it just isn't time released so I

take two pills a day vs. 1 - but I save a lot of money...)

>

> Without Ditropan, even with a neurogenic bladder that won't empty on

demand if my life depended on it (been self-cathing for about eight/nine

years), my bladder will still leak without the Ditropan. It's the one

prescription that I still forget to refill when it gets low and I always

regret it - I leak and leak without it. Strange huh? At any rate, I

don't have any side-effects from it - or if I do they're so muddled into

the side-effects of the other meds that I'm on that I don't notice them.

>

> What are your worries with this med? Are there effects from it that

I'm not aware of?

>

> Kathy

> Ditropan help- Thanks!

>

>

> Hello-

>

> Just wanted to thank everyone for their Ditropan responses. I am

learning a lot and still gearing up regarding 'what to do next.' There

are things you suggested that I didn't even think of/know about so thank

you. Feel free to continue the Ditropan/bladder topic as it is helping

me figure things out. When you have a child with so many issues, you

have to post on a few networks and then combine all the responses (for

HIrshsprungs, TC, dandy-walker cyst...) I'll let you know what ends up

happening. Still haven't started him on it yet- but have ordered

supplies for cathing, rigged a changing table for it and have the

Ditropan in the cupboard. On your mark, get set, ....

> Blessings,

> Debbie & Ben 3 1/2 yrs. (Down Syndrome, Hirschsprungs Disease,

hydrocephalus with VP shunt & large posterior fossa cyst pending surgery

on June 27th, fatty filum with possible tethered cord and recently

urodynamics testing showing bladder spasms, gallstones, left-sided

hemiplegia, visually impaired)

>

> ---------------------------------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

>

[Guest guest]

Hi Eleanor,

Your description of your bladder is how mine started after my first untethering.

However, I have a prolapsed bladder (and probably should have mentioned that in

my first email.) They said they can bring it " up " so I don't have leaking, but

at this point in my life - not really interested in being put under and have all

the pre-op bladder tests so I don't have to take Ditropan. But, also another to

be honest is that I'm still leaking most mornings even with the Ditropan and

have been for a bit over a year. I know I need to get to a uro, but until I get

some other things fixed, I just can't imagine starting that testing all over

again.

Kathy

Ditropan help- Thanks!

>

>

> Hello-

>

> Just wanted to thank everyone for their Ditropan responses. I am

learning a lot and still gearing up regarding 'what to do next.' There

are things you suggested that I didn't even think of/know about so thank

you. Feel free to continue the Ditropan/bladder topic as it is helping

me figure things out. When you have a child with so many issues, you

have to post on a few networks and then combine all the responses (for

HIrshsprungs, TC, dandy-walker cyst...) I'll let you know what ends up

happening. Still haven't started him on it yet- but have ordered

supplies for cathing, rigged a changing table for it and have the

Ditropan in the cupboard. On your mark, get set, ....

> Blessings,

> Debbie & Ben 3 1/2 yrs. (Down Syndrome, Hirschsprungs Disease,

hydrocephalus with VP shunt & large posterior fossa cyst pending surgery

on June 27th, fatty filum with possible tethered cord and recently

urodynamics testing showing bladder spasms, gallstones, left-sided

hemiplegia, visually impaired)

>

> ---------------------------------

> Got a little couch potato?

> Check out fun summer activities for kids.

>

>

[Guest guest]

Eleanor,

So long as I don't have a UTI or bladder infection, my bladder is pretty

much solid as a rock as well. I can feel that I have to pee, but without

cathing, it ain't comin' out. I take the generic form of Ditropan XL b/c

without it, I always kind of felt like I had to pee. With the Ditropan, it

relieves those spasms so I don't always have that lingering feeling that I

have to pee. I could tell the difference between really " having " to pee

(that I felt more up in my bladder like a full feeling) and just the

sensation that I had to pee -- almost like I was going to leak, that I felt

more down in my urinary tract. It was more of an annoying feeling than

anything. My bladder can hold amazing amounts of urine (especially when

totally bacteria-free) -- not good for me, my bladder or kidneys, but it

does have an amazing capacity. The capacity has decreased over the last 4

years with Ditropan and cathing. When I first started all this, my bladder

could successfully hold 1200cc's without leaking! The nurses were

absolutely amazed. Like I said, with Ditropan and regular cathing, my max

capacity is around 600cc's. I try not to let it get that full, but it sure

is nice to know that I have a bladder of steel and accidents are a rarity

(unless I have an infection). Even most of my other para friends with

decent bladder control === their bladders would not hold 500 cc's without

just giving way. But once my bladder does get full and it decides that it

has had enough -- the dam breaks and out my bladder empties (but I am

generally in a good amount of pain by the time this happens --- unless I am

asleep, and don't wake up in time -- and if it does happen, I have been

putting off going to the bathroom for a while).

The Ditropan isn't why I have to cath, though. My body just cannot release

that sphincter. Ditropan doesn't " paralyze " your bladder. If your bladder

muscles are paralyzed, they are -- Ditropan is not going to change that.

Ditropan just relieves bladder spasms -- kind of like Baclofen for the

bladder. In addition to the discomfort that bladder spasms can cause and

potential for incontinence, Ditropan can help decrease the pressure in the

bladder which reduces your chance for reflux -- very bad for your kidneys.

The only side effect I have noticed from the Ditropan is excessive thirst.

I pretty much always carried something to drink with me before the Ditropan,

but now, I ALWAYS have something to drink with me at all times -- even for a

quick car ride. I always have something to drink on my nightstand b/c I can

wake up with horrible cotton mouth. It seemed really bad when I first

started taking it, but after a month or so, I got accustomed to it, and

doesn't really bother me much anymore. I don't notice that it made me

sleepy or anything (I swear I think every med out there on the market says

it can make you " drowsy " ).

Jenn

>

> Re: Ditropan help- Thanks!

>

> I was put on ditropan (generic brand too) and my urologist said it would

> paralyse the bladder so I couldn't pee on my own and would HAVE to cath.

> Well I can still go on my own, but it is just as difficult as it was

> before I started. I never have been a leaker myself however. Durring

> urodynamics, the testing part where they have you bare down almost like

> your giving birth,lol, to see if you'd leak ...... well as full as I was

> I didn't spill a drop lol. I haven't noticed any side effects from it

> myself. But like others here, I too am on other meds so I am not sure I

> would notice, unless it was a sever reaction. Whatever you decide I wish

> you and your son luck with his upcoming surgery.

>

> Eleanor

>

>

[Guest guest]

Hi Kathy,

I'm glad you mentioned that. My bladder is prolapsed actually. Or was

when I had my hysterectomy 8 yrs ago. The Dr said she wouldn't touch it

as I was too young (29) and chances of not needing a second, third or

fourth surgery were almost impossible once you start on it.( My MIL has

had many - bladder lifts - too). The ditropan is to stop the spasms even

though I don't leak, I'm usually running in every 10 minutes thinking I

have to go when I really don't. Its helped somewhat - or the month long

antibiotic did ? Still trying to figure it all out. My Mom was on

ditropan for 5 yrs and said it didn't help her either. I asked why take

it then ? She said the Dr wouldn't let her stop ? Ok then.

Eleanor

> >

> > Hi

> >

> > I take the generic form of Ditropan (it just isn't time released so

I

> take two pills a day vs. 1 - but I save a lot of money...)

> >

> > Without Ditropan, even with a neurogenic bladder that won't empty on

> demand if my life depended on it (been self-cathing for about

eight/nine

> years), my bladder will still leak without the Ditropan. It's the one

> prescription that I still forget to refill when it gets low and I

always

> regret it - I leak and leak without it. Strange huh? At any rate, I

> don't have any side-effects from it - or if I do they're so muddled

into

> the side-effects of the other meds that I'm on that I don't notice

them.

> >

> > What are your worries with this med? Are there effects from it that

> I'm not aware of?

> >

> > Kathy

> > Ditropan help- Thanks!

> >

> >

> > Hello-

> >

> > Just wanted to thank everyone for their Ditropan responses. I am

> learning a lot and still gearing up regarding 'what to do next.' There

> are things you suggested that I didn't even think of/know about so

thank

> you. Feel free to continue the Ditropan/bladder topic as it is helping

> me figure things out. When you have a child with so many issues, you

> have to post on a few networks and then combine all the responses (for

> HIrshsprungs, TC, dandy-walker cyst...) I'll let you know what ends up

> happening. Still haven't started him on it yet- but have ordered

> supplies for cathing, rigged a changing table for it and have the

> Ditropan in the cupboard. On your mark, get set, ....

> > Blessings,

> > Debbie & Ben 3 1/2 yrs. (Down Syndrome, Hirschsprungs Disease,

> hydrocephalus with VP shunt & large posterior fossa cyst pending

surgery

> on June 27th, fatty filum with possible tethered cord and recently

> urodynamics testing showing bladder spasms, gallstones, left-sided

> hemiplegia, visually impaired)

> >

> > ---------------------------------

> > Got a little couch potato?

> > Check out fun summer activities for kids.

> >

> >

[Guest guest]

Hi Jenn,

Your explination of what ditropan does is much better then his LOL And

yes, I knew it wasn't paralysing it even though he said it was - I've

gone on my own a few times.

My bladder is like yours. Able to hold well over 5oo cc's. He wants me

cathing every 3 hrs (4 max) to be sure to never have that much. Also

like you, mine are always bactirial free. Well No, not always, I had my

ultrasound for my overy check up last yr (hysterectomy) and they checked

my kidneys too. It showed an old infection on the kidneys they said. I

had no clue.

I'm always thirsty too. But I'm on demerol too. That gives bad cotton

mouth too.

Appreciate the sharing this morning. Catch you later in the day. Have a

good one.

E

>

> Eleanor,

>

> So long as I don't have a UTI or bladder infection, my bladder is

pretty

> much solid as a rock as well. I can feel that I have to pee, but

without

> cathing, it ain't comin' out. I take the generic form of Ditropan XL

b/c

> without it, I always kind of felt like I had to pee. With the

Ditropan, it

> relieves those spasms so I don't always have that lingering feeling

that I

> have to pee. I could tell the difference between really " having " to

pee

> (that I felt more up in my bladder like a full feeling) and just the

> sensation that I had to pee -- almost like I was going to leak, that I

felt

> more down in my urinary tract. It was more of an annoying feeling than

> anything. My bladder can hold amazing amounts of urine (especially

when

> totally bacteria-free) -- not good for me, my bladder or kidneys, but

it

> does have an amazing capacity. The capacity has decreased over the

last 4

> years with Ditropan and cathing. When I first started all this, my

bladder

> could successfully hold 1200cc's without leaking! The nurses were

> absolutely amazed. Like I said, with Ditropan and regular cathing, my

max

> capacity is around 600cc's. I try not to let it get that full, but it

sure

> is nice to know that I have a bladder of steel and accidents are a

rarity

> (unless I have an infection). Even most of my other para friends with

> decent bladder control === their bladders would not hold 500 cc's

without

> just giving way. But once my bladder does get full and it decides that

it

> has had enough -- the dam breaks and out my bladder empties (but I am

> generally in a good amount of pain by the time this happens --- unless

I am

> asleep, and don't wake up in time -- and if it does happen, I have

been

> putting off going to the bathroom for a while).

>

> The Ditropan isn't why I have to cath, though. My body just cannot

release

> that sphincter. Ditropan doesn't " paralyze " your bladder. If your

bladder

> muscles are paralyzed, they are -- Ditropan is not going to change

that.

> Ditropan just relieves bladder spasms -- kind of like Baclofen for the

> bladder. In addition to the discomfort that bladder spasms can cause

and

> potential for incontinence, Ditropan can help decrease the pressure in

the

> bladder which reduces your chance for reflux -- very bad for your

kidneys.

>

> The only side effect I have noticed from the Ditropan is excessive

thirst.

> I pretty much always carried something to drink with me before the

Ditropan,

> but now, I ALWAYS have something to drink with me at all times -- even

for a

> quick car ride. I always have something to drink on my nightstand b/c

I can

> wake up with horrible cotton mouth. It seemed really bad when I first

> started taking it, but after a month or so, I got accustomed to it,

and

> doesn't really bother me much anymore. I don't notice that it made me

> sleepy or anything (I swear I think every med out there on the market

says

> it can make you " drowsy " ).

>

> Jenn

>

> >

> > Re: Ditropan help- Thanks!

> >

> > I was put on ditropan (generic brand too) and my urologist said it

would

> > paralyse the bladder so I couldn't pee on my own and would HAVE to

cath.

> > Well I can still go on my own, but it is just as difficult as it was

> > before I started. I never have been a leaker myself however. Durring

> > urodynamics, the testing part where they have you bare down almost

like

> > your giving birth,lol, to see if you'd leak ...... well as full as I

was

> > I didn't spill a drop lol. I haven't noticed any side effects from

it

> > myself. But like others here, I too am on other meds so I am not

sure I

> > would notice, unless it was a sever reaction. Whatever you decide I

wish

> > you and your son luck with his upcoming surgery.

> >

> > Eleanor

> >

> >

>

>

>

[Guest guest]

was found muttering these words:

> Hi

>

> I take the generic form of Ditropan (it just isn't time released so I take two

pills a day vs. 1 - but I save a lot of money...)

>

> Without Ditropan, even with a neurogenic bladder that won't empty on demand if

my life depended on it (been self-cathing for about eight/nine years), my

bladder will still leak without the Ditropan. It's the one prescription that I

still forget to refill when it gets low and I always regret it - I leak and leak

without it. Strange huh? At any rate, I don't have any side-effects from it -

or if I do they're so muddled into the side-effects of the other meds that I'm

on that I don't notice them.

>

> What are your worries with this med? Are there effects from it that I'm not

aware of?

Is that common Kathy? Being unable to go but still leaking? All 4 of my

boys could attempt line dancing on my bladder and nothing would come out.

Only once when I was sleeping, and I would have loved to have understood

the voodoo that caused that LOL. Otherwise I could go all day long and the

most that would happen is I would have trouble moving around because my

bladder would get in the way of my other organs -- for example I might

notice a cramp in my upper thigh. I would be like a 4 month pregnant woman

trying to get out of a chair, kind of rolling and think.. hmmm.. wonder

when the last time I emptied my bladder...

M.

(I do not have enough money to pay my boys to consider line dancing btw)

[Guest guest]

Hey ,

No idea how common it is; however, I had a very messed up bladder tuck done on

me eleven years ago (that actually led to my diagnosis of tethered cord ... so

many problems after this and the hysterectomy that I finally was sent to a real

uro who sent me to a neuro who ordered an MRI ...rest is history - sort of like

the song I know an old lady who swallowed a fly--- gyn, to uro, to neuro - can

you hear the music??? <G>)

At any rate, about two years ago I guess I started leaking if my bladder became

too full ... before this, I could hold pretty much any amount my body made,

nothing would get by. I don't know what caused this issue for me, but I was

told I have a cystercele (sp) - a herniated pocket...but I was also told eleven

years ago after the hysterectomy and bladder tuck that they " corrected " a

suspicious cystercele(sp). Obviously, there are some problems with my bladder

that I'll have to have addressed soon - just waiting for this intrathecal pain

pump study to slow down before I start making more appts with other doctors.

For the first eight weeks of this study you have to go to the clinic once weekly

and one appt. a week is my max these days.

Kathy

Re: Ditropan help- Thanks!

was found muttering these words:

> Hi

>

> I take the generic form of Ditropan (it just isn't time released so I take

two pills a day vs. 1 - but I save a lot of money...)

>

> Without Ditropan, even with a neurogenic bladder that won't empty on demand

if my life depended on it (been self-cathing for about eight/nine years), my

bladder will still leak without the Ditropan. It's the one prescription that I

still forget to refill when it gets low and I always regret it - I leak and leak

without it. Strange huh? At any rate, I don't have any side-effects from it - or

if I do they're so muddled into the side-effects of the other meds that I'm on

that I don't notice them.

>

> What are your worries with this med? Are there effects from it that I'm not

aware of?

Is that common Kathy? Being unable to go but still leaking? All 4 of my

boys could attempt line dancing on my bladder and nothing would come out.

Only once when I was sleeping, and I would have loved to have understood

the voodoo that caused that LOL. Otherwise I could go all day long and the

most that would happen is I would have trouble moving around because my

bladder would get in the way of my other organs -- for example I might

notice a cramp in my upper thigh. I would be like a 4 month pregnant woman

trying to get out of a chair, kind of rolling and think.. hmmm.. wonder

when the last time I emptied my bladder...

M.

(I do not have enough money to pay my boys to consider line dancing btw)