I had my first Ileo-conduit in 1986 from bladder cancer. Then In 2014 I
kept having UTIs all the time. The kidney doctor didn’t know how to do the
surgery that was needed to make another ileo-conduit. She wanted to put me
on hospice. We started calling every kidney doctor and that was able to do
the surgery. he got me on the table within two weeks. we had to have a long
talk and explain to me 2.out 3 die during the surgery. So I was a blessed
to survive. it took six months to get over the surgery. I was in the
hospital three weeks. I continue to have UTIs and kidney stones. This
allows you to get more bacteria causing kidney stones. I really liked the
information I read on the

On Wed, Oct 11, 2023 at 12:09 PM Eric Olson <whee...@wi.rr.com> wrote:

> There was a person on the list that had a syrinx, but sadly, she passed
> away.  She had a shunt put in that let the fluid in the syrinx drain
> continuously into her stomach.  Since you're doing research anyway, perhaps
> do some research on a shunt.  Neither is a no joke surgery.  Are you sure
> your digestive issues are from the syrinx and not something more common
> like IBS?
>
> On Mon, Oct 9, 2023 at 1:08 PM Val Cleroux <vcler...@rogers.com> wrote:
>
>> Hi everyone:
>>
>> I am a C3/4 quad from a motor vehicle accident in 2000. I have a syrinx
>> which is a cyst that fills up with cerebral fluid and stretches down the
>> spine. This cyst affects how the messages are sent from the brain to the
>> organs in order to make them work properly. So far it has affected my
>> digestive system and I am very limited as to what I can eat.
>>
>> My surgeon is suggesting an ileostomy and I am now researching to see if
>> this would be beneficial or not? Is there anyone out there that has an
>> ileostomy that I could speak with?
>>
>> Thanks in advance for anyone that can help me with information so that I
>> can make my decision which a yes of a no?
>>
>> Val Cleroux
>> www.whyped.ca
>> "Communication is the key to success"
>>
>>
>

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