Re: Re: I'd like to chat with some adults who have had bladder augmenta...

[Guest guest]

The one thing I did get my NSG to say was that horseback riding would not

be a great sport for someone with tethered cord (with or without augment)!

LOL I keep trying to get them to give my daughter some reasonable

restrictions (in my eyes) but they won't!! I did meet someone I know, a NSG,

at a

cocktail party who agreed that snowboarding wasn't a great idea, but I

can't get my daughter's NSG to say it!!! Overprotective Mommy, Randee PS Dtr

now 20...pretty much doesn't matter what I think!

In a message dated 1/22/2011 9:51:24 A.M. Central Standard Time,

jslapointe@... writes:

Thank you, Jodi! : ) I'm happy to hear that things are going so well for

you. It certainly makes the idea of augment less scary!

Did I ask you if the doctor gave you any activity restrictions.... like

someone told me you can't ride a horse after an augment. So I';m wondering if

some activities or sports might be off limits.

Sorry If I already asked you that question!

Stacey

mom to Sofia age 5 TC, SA/CRS

>

> Stacey,

>

> I was told that the Dr. took part of my intestine to enlarge my bladder

and make

> the stoma. But I was also told that I didn't have my appendix, when I

was in the

> hospital last year for a bowel obstruction, so I'll bet that I do have

> the mitrofanoff. Yes. No problems. I do not have to have any kind of

scope. I

> just have to go to my urologist once a year to see how I'm doing. Right

after

> the surgery, I had to wean the " new " bladder into use. I cathed every 2

hours

> for a few days, then every 4, then every 6, to stretch the bladder. I

choose to

> cath every 4-5 hours now but can go 8 hours at night without cathing

(that's

> where I can sometimes get 800cc's). I used to flush with saline every

day for

> several months, then about once a month. Now I flush when I notice

things

> getting a little murky. I don't keep tabs on my electrolytes because I

wasn't

> told that I had to. And my Dr. would have told me if I needed to.

>

> Let me know if you have any more questions.

>

> Good luck!

>

> Jodi

>

> >Thanks, Jodi. : )

>

> Is the ileal conduit a 'new bladder' so to speak? Or is it the

mitrofanoff?

> Since you've mentioned such a large increase in volume, I want to assume

that

> the ileum was either used to make a new bladder or augment your native

one.

>

> So it's been about ten years and no problems? That's great to know. Do

you have

> to start yearly scoping at this point? I was told by one doctor to start

at five

> years and the other said ten.

>

> Do you flush your bladder with saline daily?

>

> Do they keep tabs on your electrolytes?

>

> Sofia needs the bladderneck procedure, mitrofanoff and possibly the

augment, and

> as you say, it's a big surgery, so we're looking into minimally invasive

options

> in the hope of making it as easy as possible on her.

>

> Stacey

> mom to Sofia age 5

>

>

>

>

> [Non-text portions of this message have been removed]

>

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[Guest guest]

I've never been told I had any restrictions other than " If it hurts, don't

do it. " . I was told to avoid straining. But I've been horseback riding & am

dying to go to Six Flags. I'm a coaster junkie.

I don't see why she couldn't participate in a hippo-therapy program. They

don't ride that fast. And what if she rode a Tennessee ? Their gait is

smooth.

Sent from my iPhone

The one thing I did get my NSG to say was that horseback riding would not

be a great sport for someone with tethered cord (with or without augment)!

LOL I keep trying to get them to give my daughter some reasonable

restrictions (in my eyes) but they won't!! I did meet someone I know, a NSG,

at a

cocktail party who agreed that snowboarding wasn't a great idea, but I

can't get my daughter's NSG to say it!!! Overprotective Mommy, Randee PS Dtr

now 20...pretty much doesn't matter what I think!

In a message dated 1/22/2011 9:51:24 A.M. Central Standard Time,

jslapointe@... <jslapointe%40comcast.net> writes:

Thank you, Jodi! : ) I'm happy to hear that things are going so well for

you. It certainly makes the idea of augment less scary!

Did I ask you if the doctor gave you any activity restrictions.... like

someone told me you can't ride a horse after an augment. So I';m wondering

if

some activities or sports might be off limits.

Sorry If I already asked you that question!

Stacey

mom to Sofia age 5 TC, SA/CRS

>

> Stacey,

>

> I was told that the Dr. took part of my intestine to enlarge my bladder

and make

> the stoma. But I was also told that I didn't have my appendix, when I

was in the

> hospital last year for a bowel obstruction, so I'll bet that I do have

> the mitrofanoff. Yes. No problems. I do not have to have any kind of

scope. I

> just have to go to my urologist once a year to see how I'm doing. Right

after

> the surgery, I had to wean the " new " bladder into use. I cathed every 2

hours

> for a few days, then every 4, then every 6, to stretch the bladder. I

choose to

> cath every 4-5 hours now but can go 8 hours at night without cathing

(that's

> where I can sometimes get 800cc's). I used to flush with saline every

day for

> several months, then about once a month. Now I flush when I notice

things

> getting a little murky. I don't keep tabs on my electrolytes because I

wasn't

> told that I had to. And my Dr. would have told me if I needed to.

>

> Let me know if you have any more questions.

>

> Good luck!

>

> Jodi

>

> >Thanks, Jodi. : )

>

> Is the ileal conduit a 'new bladder' so to speak? Or is it the

mitrofanoff?

> Since you've mentioned such a large increase in volume, I want to assume

that

> the ileum was either used to make a new bladder or augment your native

one.

>

> So it's been about ten years and no problems? That's great to know. Do

you have

> to start yearly scoping at this point? I was told by one doctor to start

at five

> years and the other said ten.

>

> Do you flush your bladder with saline daily?

>

> Do they keep tabs on your electrolytes?

>

> Sofia needs the bladderneck procedure, mitrofanoff and possibly the

augment, and

> as you say, it's a big surgery, so we're looking into minimally invasive

options

> in the hope of making it as easy as possible on her.

>

> Stacey

> mom to Sofia age 5

>

>

>

>

>

[Guest guest]

the one surgeon who said he would advise against horseback riding said it

because of the likelihood that a fall would be on the tailbone, butt, back

... the other two NSG's said do whatever you want..the cocktail party NSG

() said he would advise against snowboarding .. again because of the

likelihood of falling on the butt, tailbone etc. Clearly there is little to no

agreement on any of this...other than this Mom (aka me) who would probably

lock my daughter in her room and bring her meals if left to my own

devices..thus, not a good judge at all! She refuses to become a scared,

dependent

adult despite my very best efforts! Thank Goodness! Randee PS She is

going to return to dance lessons after a 6 year absence and it terrifies me

as we discovered the tsc probably due to the ballet instructor who would

exert pressure on their backs so they could touch their toes with their legs

straight out in front of them ... a blessing to have found it though I

often wonder could we have happily sailed along many years without any

knowledge or problems if not for this " high " level ballet class..sigh etc.

In a message dated 1/22/2011 3:08:16 P.M. Central Standard Time,

jlbobin@... writes:

I've never been told I had any restrictions other than " If it hurts, don't

do it. " . I was told to avoid straining. But I've been horseback riding &

am

dying to go to Six Flags. I'm a coaster junkie.

I don't see why she couldn't participate in a hippo-therapy program. They

don't ride that fast. And what if she rode a Tennessee ? Their gait

is

smooth.

Sent from my iPhone

The one thing I did get my NSG to say was that horseback riding would not

be a great sport for someone with tethered cord (with or without augment)!

LOL I keep trying to get them to give my daughter some reasonable

restrictions (in my eyes) but they won't!! I did meet someone I know, a

NSG,

at a

cocktail party who agreed that snowboarding wasn't a great idea, but I

can't get my daughter's NSG to say it!!! Overprotective Mommy, Randee PS

Dtr

now 20...pretty much doesn't matter what I think!

In a message dated 1/22/2011 9:51:24 A.M. Central Standard Time,

jslapointe@... <jslapointe%40comcast.net> writes:

Thank you, Jodi! : ) I'm happy to hear that things are going so well for

you. It certainly makes the idea of augment less scary!

Did I ask you if the doctor gave you any activity restrictions.... like

someone told me you can't ride a horse after an augment. So I';m wondering

if

some activities or sports might be off limits.

Sorry If I already asked you that question!

Stacey

mom to Sofia age 5 TC, SA/CRS

>

> Stacey,

>

> I was told that the Dr. took part of my intestine to enlarge my bladder

and make

> the stoma. But I was also told that I didn't have my appendix, when I

was in the

> hospital last year for a bowel obstruction, so I'll bet that I do have

> the mitrofanoff. Yes. No problems. I do not have to have any kind of

scope. I

> just have to go to my urologist once a year to see how I'm doing. Right

after

> the surgery, I had to wean the " new " bladder into use. I cathed every 2

hours

> for a few days, then every 4, then every 6, to stretch the bladder. I

choose to

> cath every 4-5 hours now but can go 8 hours at night without cathing

(that's

> where I can sometimes get 800cc's). I used to flush with saline every

day for

> several months, then about once a month. Now I flush when I notice

things

> getting a little murky. I don't keep tabs on my electrolytes because I

wasn't

> told that I had to. And my Dr. would have told me if I needed to.

>

> Let me know if you have any more questions.

>

> Good luck!

>

> Jodi

>

> >Thanks, Jodi. : )

>

> Is the ileal conduit a 'new bladder' so to speak? Or is it the

mitrofanoff?

> Since you've mentioned such a large increase in volume, I want to assume

that

> the ileum was either used to make a new bladder or augment your native

one.

>

> So it's been about ten years and no problems? That's great to know. Do

you have

> to start yearly scoping at this point? I was told by one doctor to start

at five

> years and the other said ten.

>

> Do you flush your bladder with saline daily?

>

> Do they keep tabs on your electrolytes?

>

> Sofia needs the bladderneck procedure, mitrofanoff and possibly the

augment, and

> as you say, it's a big surgery, so we're looking into minimally invasive

options

> in the hope of making it as easy as possible on her.

>

> Stacey

> mom to Sofia age 5

>

>

>

>

> [Non-text portions of this message have been removed]

>

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