Neo After 3 Years and No Sleep

Sylvia,

Thank you for your informatio. I am in Miami and very far from Iowa.

I do not know about going through another major surgery, can you tell me just a little about yours from converting a neo to a conduit.

Thanking you in advance.
Silk

Hi Holly,

Thank you so very much for your valuable info. I was not sure much could be done when you have a neo.

I do not know much about the ideal conduct but will do sone research on it and when I see the uro April 1 for 6 month check up I will discuss with him.

I just wish at night there was something I would do. I have no issues during the day, but gee I need some sleep.

Thank you Holly, also I am in Miami, very far from Iowa.

When I first found out about bladder cancer my surgeon highly recommended this site and has for years been so very helpfull.

Thank you all, it is nice to know you are not alone.

Silk

I know of several women who have had the same problem with neo bladders. I, also, know that Dr. O'Donnall at the Univeristy of Iowa has converted many of them to Indiana Pouches. That is what I have, and I am so glad that I do. I wore a bag on my leg for a while after my surgery. I am glad that I do not have to do that. It has been 16yrs. since my radical, and very, very few problems.

Hi Silk, Holly here,

Sorry to hear of your troubles with the neo. Sounds all too familiar.
I was also very sleep deprived after 3 years. I also had to cath for residuals and I even had the pain from back up. That led to 2 years of numerous kidney infections, 25 pounds of bloat, swelling in both kidneys, and other health issues.
Last fall I traded the failed neo for an illeal conduit which has resolved all the issues. I no longer have the kidney infections, constant back pain, cathing, leaking, hypercontinence, etc. At night I hook up to a draining bag and sleep all night long. I think it was the only way to resolve the issues for me.
I wish had better thoughts for you. Thinking positive for you and feel free to email me Holly

Lyndia,

I like my neo, just "issues" and it seems with almost any diversion it has its problems.

I work, no problems with cath, and no do not get cat naps. I put in long days with being up at 4:00 a.m. but I am in bed at 9:00.

We all have health problems, some more than others, and after doing more research it appears, we are not alone.

Prayers with you also.
Silk

Hi Herb,

Thank you for your reply. I still feel very lucky even with Neo issues.

Do you, or anyone know, if a Foley can be used at night??? Or do you have to be a professional to insert one.

After three years of having to cath, it just becomes a normal, almost natural thing to do.

I have a great system to re-use my caths and never, thank G--, any infections.

Thank you for your prayers!
Silk