Long term outcomes

17 years 9 months ago #722 by cta7978
Replied by cta7978 on topic Long term outcomes
Yeah, from several studies I have read it would appear that they can only remove certain lengths of intestines from the different areas without causing damaging long-term side effects (i.e. nutritional absorbtion imbalances).. So, I am not sure a person has enough available material to make a second neobladder? Maybe they could replace a neobladder with a koch pouch or just a new ileal counduit/external bag.

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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17 years 9 months ago #717 by alipolle
Replied by alipolle on topic Long term outcomes
p.s. and yes, i think they just re-do the operation if u get a malignancy later on. i think i'ts some kind of external pouch tho, but i'm not sure

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17 years 9 months ago #716 by alipolle
Replied by alipolle on topic Long term outcomes
i had urinary diversion when i was only 6 mnths old and am now almost 29... no malignancies yet, but god, my kidneys seem to have had enough! they've taken a battering over the yrs. i had an old style diversion, a ureterosigmoidostomy which isn't actually carried out anymore due to the high chance of colo-rectal tumours occuring 20 - 30 yrs later. but i've just been in touch with a urologist at john hopkins who seems to think that recent research is right i.e. no matter what the urinary diversion, this malignancy threat 20 - 30 yrs down the line is a strong possibility. Colonoscopy's every 2 - 5 yrs to check everything's all right seem to be the best option for stopping any tumours developing into a serious problem.
hope this helps!
xx

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17 years 10 months ago #655 by skypilot
Replied by skypilot on topic Long term outcomes
I think you also have to look at how new things are being done in research. With so many years you have left they will come up with stuff to help you. For me an older man of 57, I just would like to have my new bladder get me by for a 15 to 20 years. But of course we would all like to have our original parts. Maybe they will even find a cure. Don

Hanging in there!

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17 years 10 months ago #653 by cta7978
Long term outcomes was created by cta7978
I'm wondering what the long term effects of having a urinary diversion are? I am in my mid 30's and I am pretty sure they don't last for 50 years?

I think I have read that many people develop cancer 20-30 years out in the areas where the uretuers are connected to the bladder replacement and other problems related to the age of the urinary diversion. I understand this might not be a big concern for those of you 55+ or so, but I am interested in finding out what some of the younger crowd has been told by their doctors.

If I do end up with a bladder replacement, do you have enough spare intestines to make a second replacement sometime down the line? If you have a neobladder or pouch and it eventually becomes diseased or fails, do they try and construct a new one or do you just end up with a new ileal conduit?

Maybe these things aren't worth worrying about now, but I am curious..

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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