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

[Guest guest]

Thanks all,

I've had trouble getting taken seriously when I ask about activity restrictions

too! How weird! But it does make sense that the TC alone, with or without

augment, should make you really cautious about some activities.

Since we'd have to go out of our way to get involved with horses, I guess I'll

just try to play that one safe and not start anything she may be compelled to

stop in the future.

I'm not having much luck getting info about metabolic issues in augment

patients. Anyone have input about that?

Thanks,

Stacey

mom to Sofia age 5

> >

> > 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

> >

> >

> >

> >

> >