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

[Guest guest]

Thank you .

Did they use small bowel for your son's augment? If so, did the doctors speak

with you about possible long term complications?

Stacey

mom to Sofia age 5

>

> >

> >

> > Hi,

> >

> > We'll be having urologic reconstruction for Sofia (age 5) soon, and we have

> > differing opinions from the two uros we consult with regarding augmentation.

> > So, we're not sure if we should do it right away, or do the other stuff

> > (bladderneck procedure and mitrofanoff) and then wait to see how her bladder

> > reacts. The second option could be good or bad- if her bladder is fine,

> > we'll have avoided the augment, but if it reacts badly, we'd have to go back

> > for another huge surgery.

> >

> > To most, it may seem easier to just do it and get it over with, but I have

> > a HUGE fear of the augment. The laundry list of possible complications

> > shakes me to the core. But I don't know if that's rational. Are there lots

> > of folks out there who have augments who are healthy, and active, and are

> > not plagued by things like stones, electrolyte imbalance and tumors?

> >

> > If you've had an augment, or can put me in touch with someone who's had one

> > (good or bad experience) I would love to chat!

> >

> > Thank you!

> > Stacey

> > mom to Sofia, TC

> >

> >

> >

>

>

>

[Guest guest]

Stacey,

I had an Ileal Conduit in 2000, when I was 36. I cath through my abdomen,

without the need for a bag. I can feel when my bladder is full so that was my

best option. My Dr. suggested the surgery since I was in a w/c and had a spastic

bladder, only able to hold 100cc's at a time. I can't lie, it was a difficult

surgery and I was in the hospital for 16 days. But if that's the one your

daughter is going to have, it's best to have it when she's young and resilient.

Now, I can hold up to 800cc's (I usually cath every 4-5 hours - 400-500cc's so

not to push it) and have great bladder control. I did have to have another

(minor) surgery 6 months after the first due to leaking but that hasn't happened

since. I've had no other problems (stones, infections, etc.) since. I'm SO glad

I did it, and wish I had done it years earlier.

Jodi

>Hi,

We'll be having urologic reconstruction for Sofia (age 5) soon, and we have

differing opinions from the two uros we consult with regarding augmentation. So,

we're not sure if we should do it right away, or do the other stuff (bladderneck

procedure and mitrofanoff) and then wait to see how her bladder reacts. The

second option could be good or bad- if her bladder is fine, we'll have avoided

the augment, but if it reacts badly, we'd have to go back for another huge

surgery.

To most, it may seem easier to just do it and get it over with, but I have a

HUGE fear of the augment. The laundry list of possible complications shakes me

to the core. But I don't know if that's rational. Are there lots of folks out

there who have augments who are healthy, and active, and are not plagued by

things like stones, electrolyte imbalance and tumors?

If you've had an augment, or can put me in touch with someone who's had one

(good or bad experience) I would love to chat!

Thank you!

Stacey

mom to Sofia, TC

[Guest guest]

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

>

> Stacey,

>

> I had an Ileal Conduit in 2000, when I was 36. I cath through my abdomen,

> without the need for a bag. I can feel when my bladder is full so that was my

> best option. My Dr. suggested the surgery since I was in a w/c and had a

spastic

> bladder, only able to hold 100cc's at a time. I can't lie, it was a difficult

> surgery and I was in the hospital for 16 days. But if that's the one your

> daughter is going to have, it's best to have it when she's young and

resilient.

> Now, I can hold up to 800cc's (I usually cath every 4-5 hours - 400-500cc's so

> not to push it) and have great bladder control. I did have to have another

> (minor) surgery 6 months after the first due to leaking but that hasn't

happened

> since. I've had no other problems (stones, infections, etc.) since. I'm SO

glad

> I did it, and wish I had done it years earlier.

>

> Jodi

>

> >Hi,

>

> We'll be having urologic reconstruction for Sofia (age 5) soon, and we have

> differing opinions from the two uros we consult with regarding augmentation.

So,

> we're not sure if we should do it right away, or do the other stuff

(bladderneck

> procedure and mitrofanoff) and then wait to see how her bladder reacts. The

> second option could be good or bad- if her bladder is fine, we'll have avoided

> the augment, but if it reacts badly, we'd have to go back for another huge

> surgery.

>

> To most, it may seem easier to just do it and get it over with, but I have a

> HUGE fear of the augment. The laundry list of possible complications shakes me

> to the core. But I don't know if that's rational. Are there lots of folks out

> there who have augments who are healthy, and active, and are not plagued by

> things like stones, electrolyte imbalance and tumors?

>

> If you've had an augment, or can put me in touch with someone who's had one

> (good or bad experience) I would love to chat!

>

> Thank you!

> Stacey

> mom to Sofia, TC

>

>

>

>

>