Re: [QUAD-L] Ileostomy
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 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 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" >> >> >
Re: [QUAD-L] Ileostomy
Sorry, I just saw this email from months ago. Have you made a decision on what to do? My late best friend had her ileostomy after years of incontinence, occasional impactions, and discomfort with every bowel movement. She hated the idea of the colostomy bag, so she resisted her doctor's advice for years. When she finally just had to have the procedure, she was really astonished. The care of the bag was an annoyance, and she was very insecure about its impact on her sex life (fortunately, on this latter issue, her FWB was very accepting of it), But otherwise, it was such a relief she wished she had done it years earlier. She had much less pain, much less disruption, and regained all of those hours she lost to bowel care. Until I found the peristeen bowel irrigation system, my next option was going to be an ileostomy. My friend's experience greatly reduced my resistance to the procedure. if that's what's needed someday, I've made my peace with it. Ed From: Val Cleroux Sent: Monday, October 9, 2023 11:08 AM To: Quad List Subject: [QUAD-L] Ileostomy 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"
