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

[Guest guest]

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]

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

>

>

>

>

>