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Thank you so much. BarbaraAny So. Cal. Kaiser patients?
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Any So. Cal. Kaiser patients?
My sister is scheduled to have a neobladder done on Oct. 7th. She is with Kaiser. Her doctors do the neo and the external bag but don't offer the Indiana Pouch. I am worried that they will find the cancer has spread to the urethra and then she will only be able to get the external pouch. Anyone out there use Kaiser near San Diego for all three proceedures? I know that this is cutting it real short before surgery but need words of encouragement. Also, I read on another site that people sometimes have gone from the external bag to the Indiana Pouch. Has anyone heard of that or had it done. Thank you so much. Barbara
Thank you so much. BarbaraHello! This is my first post and I registered just so I could send you this message. I wore a urostomy pouch for 20 plus years and, in 1994, had the Indiana pouch sugery. Here are my pros and cons:
Pros: my mental health, including self-esteem, confidence, body image, and overall happiness, greatly improved after having the Indiana pouch surgery. It's easier to manage, to wear clothing, and is less conspicuous.
Cons: my kidney health has declined. I, as with many others, have reflux. For me this is because my new neo bladder wall (which is a piece of bowel) does not act like a bladder wall to keep the urine from backing up through the ureter and to the kidneys. My kidneys are always infected. Ask your sister's docter about how to prevent this regardless of what surgery she has. Medical technology has improved since 1994 with regard to this procedure. I don't want to scare you (or your sister) away from it but her kidney health should be a concern.
Having said that, if I had to choose again, I would still have the Indiana pouch surgery. I prefer to have quality of life. I wore a pouch since I was a toddler and wanted to experience life without it. This is my experience and your sister has had a different life experience and needs to make the best decision for her.
I know that my words don't answer all of your questions but I will leave you with this. Get connected. Ask questions. Don't go into any major medical decision without consulting with several sources (i.e. other patients, doctors, nurses). And, know that it's going to be OK whatever the end decision is. I'm living proof!
Thank you for being there for your sister. She's lucky to have you.
Best,
Barbara
Pros: my mental health, including self-esteem, confidence, body image, and overall happiness, greatly improved after having the Indiana pouch surgery. It's easier to manage, to wear clothing, and is less conspicuous.
Cons: my kidney health has declined. I, as with many others, have reflux. For me this is because my new neo bladder wall (which is a piece of bowel) does not act like a bladder wall to keep the urine from backing up through the ureter and to the kidneys. My kidneys are always infected. Ask your sister's docter about how to prevent this regardless of what surgery she has. Medical technology has improved since 1994 with regard to this procedure. I don't want to scare you (or your sister) away from it but her kidney health should be a concern.
Having said that, if I had to choose again, I would still have the Indiana pouch surgery. I prefer to have quality of life. I wore a pouch since I was a toddler and wanted to experience life without it. This is my experience and your sister has had a different life experience and needs to make the best decision for her.
I know that my words don't answer all of your questions but I will leave you with this. Get connected. Ask questions. Don't go into any major medical decision without consulting with several sources (i.e. other patients, doctors, nurses). And, know that it's going to be OK whatever the end decision is. I'm living proof!
Thank you for being there for your sister. She's lucky to have you.
Best,
Barbara