Desperate for Advice: Neurogenic Bladder & Constant Infections - Radical Cystectomy?

G'day digger from Australia :)

My post may be of interest, if the link works... https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=9460

I had an ileal conduit 50 years ago. Easy to maintain, no issues, and probably saved my kidneys (and my life).

Hi everyone, thank you all so much. Just had my appointment yesterday with the urologist. I'm having my radical cystectomy ileal conduit surgery on July 11th. He said I should be okay. I feel very comfortable about my doctor. He spent over an hour talking about what to expect. He said the stoma nurse is very good too. I know there might be some bumps in the road, but I'm hopeful nothing goes wrong. I know there will be some pain, but it's for a short while compared to what I'm going through now. I'm not too worried. I'm going from one type of bag to another, minus the spasms and pain. Thank you all. Any tips on anything gladly accepted. God bless.

Glad to hear your doctor spent such time with you. Sounds as if he cares! An ostomy nurse is very important and placement of the stoma is everything! Think about how your pants fit, on your waist, hips, in between? About the panties you wear. The stoma needs to not interfere with what your norm is. It will not be comfortable if your waistband is on top of the stoma. You will be much happier if it is placed below your waistline if your pant waistband is usually on your waist. Your stoma nurse will find the best muscle in that area for the stoma but when you go see her to mark your spot, be sure to discuss how you wear your clothes for stoma placement! I got lucky and mine is below when my pants hang. I would not have thought of that going in but since you are preplanning, it is a good thing to know!

I also had an appendectomy scar on the right side where the uro is going to put the stoma. Would there be a problem with that?

Digger,

I would hope not! Trying to keep your scar to a minimum?

Sometimes I feel they should have just put in a zipper!

Pup

I just wanted to let everybody know that I had my surgery on July 11th. I wanted to give you all an update. I hit a couple of bumps in the road, namely an ileus. I did my first bag change with the ostomy nurse. I still can't eat anything. They said to try again in the next couple of days. Alright, everybody, goodnight. I'm signing off. I'm exhausted.

So glad you made it through with just a few bumps! Thanks for updating. Have been thinking about you! Come back when you feel more like it!

Puppyluv

Hey Ddigger71!

I would so love to chat with you about your experience prior to your ileal conduit surgery and as well as to how you are doing at this point.

K

Hey digger!