Newly Diagnosed...Bag? Pouch?, Neobladder?

Linda,

Keep your sleeves rolled up...sounds like you are very pro-active and that is a good thing...you have a lot of work ahead of you in regard to getting the right treatment but you can do it...you must be diligent...you are now at war against cancer... in that respect...stay strong and continue to check in on this website as well as collecting information from other sources. It has been 18 months since my RC...I got an Indy Pouch which I am very pleased with...I don't mind the maintenance issues...am back to work and doing just about everything I did prior. I am more than happy to anwser any questions you might have about how I am doing. I will send you my personal email. My surgeon who was the head of urology at large medical center/school,would not give me a neo-bladder because it is his belief that it does not offer women the best quality of life...I have read some success stories but the warriors are only months or maybe a year out of surgery...the true test is how well a diversion serves us over time. I have read about warriors who have a pouch and are still going strong 15 years later. I hope to be one of them. Melodie

Dear Balihigh "Bag Lady"-

I so love the reference! Better than a Pouch Person for sure!
I would agree that it is truly MOM (mind over matter)
May I ask how old you are?
I am having a skin problem, a reaction to BCG and Mitamycin.
I'm a bit concerned about the bag attachment.
Do you just keep the bag attached by the Ilium?
What do you use to keep it close to your skin so that it doesn't flop?
I realize that we are all different, but how long did it take you to feel better in the hospital and then how long at home?
What hospital were you at?

I can't thank you enough for responding. I'm sure you are a super person.
Happy Thanksgiving where ever you are.

Warmest regards, BJ

BJ,
I received my illeal conduit in Sept. I am very satisfied with it. I can do anything I did before and I have adjusted to having the bag. I think it is just a frame of mind. I have recovered quickly and have my strength back much more quickly than I thought. If I can answer any questions about being a bag lady or the surgery, let me know.
Balihigh

Betsy Mae-
Where do you live in England?
My husband is from there.
Surgery is scheduled for Dec 10th
I am going with the Ileal as I only have one kidney.

Take Care, BJ

December 10th is the day.

I don't worry so much about looking normal.
I asked to see the pouch before choosing it.

I have ordered a "Bella Band". This is an item used by pregnant women to cover
their stomach. An elsatic band that easily stretches as the stomach grows.

I ordered it because I am thinking of wearing it so that the IC (Ileal Conduit)
can stay close to the body. Won't know if it will work until both are put to the test but it might turn out to be something positive for many.

BJ

Dear Pouch People!

Cute huh? Discovered that terminology at the Web Cafe!

I will be operated on December 10th and will be recieving external apparatus... the Ileal Conduit.

I strongly believe that each person needs to discuss this with their doctor as each of us have different things going on. The option that is best suited for one, may not be for another.

I have one kidney left. It will be easier on me... a bit more simple. I am active in my business and I should be able to deal with emptying the pouch quickly and in a timely manner.

BJ