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facing bladder reconstruction

9 years 10 months ago #23793 by Mona
It must be very disheartening to be going through it all over again, I'm glad you're already at a good centre.
I grew up in York, I still miss the the heather and the sheep!

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9 years 10 months ago #23781 by suzy wong
hi mona i am at one of the biggest cancer hospitals in the north east of england so will hav to trust the consultants i have seen they were marvellous with me wen i had m y kidney out i am just blown away i hav to hav my bladder out so soon i thought i was over the worst apparently not just seem to get back to normal then wam bam thank u mam its bac :angry:

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9 years 10 months ago #23769 by Patricia
Thanks Mona...i did read that about the UK...also the same thing is happening in Germany. All bladder cancer patients are being referred to major institutions that perform many RC's and deal with bladder cancer. Thanks for that reminder......Pat

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9 years 10 months ago #23764 by Mona
Hi Suzy, I'm British but have been living in the US for almost 5 years. You probably know already, but thought I'd mention it anyway, that since last April all patients (apart from mental health and maternity) have a choice of hospitals which best suits their need. This is great as you can research with your GP where the best place for you to go is and get referred there,
Good luck,
Mona

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9 years 10 months ago #23759 by Betsy Mae
Hi Suzy!

I am UK based and had a neobladder op in August 2007. As Pat points out there are advantages and disadvantages of all operations. I am very happy with my neobladder.

Where are you based? I am on and off the site a lot at present so try and PM me or join chat if I am around. Happy to help!

Betsy Mae

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9 years 10 months ago - 9 years 10 months ago #23758 by Patricia
Suzi i have the Indiana Pouch. Its also made from intestine and you have a stoma which you have to catherize from. I chose a navel stoma as my body looks perfectly normal and its a pretty convenient place to have it. I am biased toward the Indiana for women. My pouch took a while to get trained but its certainly doable. I cath maybe 4 times during the day and i sleep 8 to 9 hours without having to get up. I have never had a UTI. I have yet to meet a female with a neo who doesn't have to get up many times during the night to empty. The stats haven't improved much in the six years i've been researching neo's and Indiana's. For women only about 33% of neos are completely successful..meaning you don't have to catherize on a regular basis..women tend to be hypo or hyper continent...it goes both ways. And urine that gets trapped tends to breed infection and UTI's. Surgeons tend to sell the neobladder to women..the Indiana is more difficult to do.
Just do the research and decide what you can deal with and then make sure your consultant knows how to do it.
Many people have the outside bag and seem to adjust just fine.
They keep taking these polls saying that we adjust to whatever we have but truthfully i've yet to find one woman with a neo who doesn't have to catherize anyway or who hasn't had multiple UTI's. If they're out there i'd like to hear from them and get their surgeons name.
Pat

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