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Surgery questions

3 years 4 months ago #52797 by Jmitchell418

I am 6 months post radical cystoprostatectomy with an ileal conduit. I went through all the same research and decided that the IC was the best choice for me. I don't have a desk job and I'm moderately active all day climbing ladders and such. I have had no issues with the IC in doing anything I want to do. I have also had no leaks and regularly get 1 week out of each appliance. I spend only about 20 minutes once a week in changing the appliance.

I chose the IC for a few reasons. I didn't want to make a decision that best suited me now at 45 years of age that made life more challenging as I get older. The IC can be maintained by a caregiver if that's where my journey takes me. More importantly, I chose the IC because for me, I saw it as the quickest way to adjust to a new normal and get on with life. I knew, personally, that I would struggle with the mental fortitude to train a neo bladder. 6 months later, I have no regrets.

Best of luck to you.

45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
The following user(s) said Thank You: Jack R

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3 years 7 months ago #52357 by DannieC
Thank you! Gkline. I appreciate your response. I have a lot more research ahead of me, but this helps. Thanks again!

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3 years 7 months ago #52356 by GKLINE
I was 53 when I was diagnosed with bc. I was quite active (skier,golfer, auto racer)
I was given the three choices and chose a neo because it offered me as close to a normal life as possible. The performed the usual tests and I was told the neo was the #1 option, but that once they were in there, they would determine what I eventually got. It was a little disappointing to be marked for a colostomy port (just in case)

Well, I have a neo. And I had a capable surgeon who did a fine job and the medical staff was vigilent about not getting an infection ( A REALLY BIG DEAL )
I followed their rules and recovered quite well after 1 1/2 months at home.
While no procedure is perfect, and I still have some incontinence issues, I am happy with my outcome. I am now 8 years out and still doing everything I always did before.

Do your research and find the best surgeon that has done HUNDREDS of procedures. And live with your choice.... Have no buyers remorse. All of the choices have their niggling downsides and they have to be overcome.

But if I had to do it again....... I'd get a neo all over again.


Best of luck

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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3 years 7 months ago #52336 by DannieC
Thank you Cynthia, I see one of the main concerns, seems to be the surgeon. I will be checking his experience out monday. I have accepted my journey, but I am afraid I might make the wrong choice. You have been very helpful in guiding me in some further research. Thanks again to you and to all who have answered my call for help.

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3 years 7 months ago - 3 years 7 months ago #52335 by Cynthia
Dannie welcome to our forum but sorry you need to be here. I have an Indiana and I am not sure what your surgeon has against it. Doing what I do I talk to a lot of the top urologists and I do know that it depends on what you do the most of a lot of times. I talked to three of the top Urological Surgeon's in the country when I had my RC done. I knew I wanted an Indiana pouch if possible a neo was not possible because of cancer spread to the ureathia and I did not wish to have an external applicance. Having a continent diversion was important to me as I was very active if not as active as you are. The first surgeon did not do Indiana's but would do one if I insisted, the other two had had a lot of luck with them and would do one unless they found something unforeseen during surgery. I chose the one that did the highest volume of RC's and as an added bonus he was someone I liked and trusted. Bottom line what every diversion you have the surgeon needs to do a high volume of them.
My experience with the Indiana has been great it is contenent and I catheratise about every four hours. I can honestly say that it has never kept me from doing what ever I wish to do. I have hiked, danced, snorkeled and lived life for ten years with it. At first like the neo it takes time to "train it" but once that was done it has been fine. I just have to plan to have a disposable catheter with me while out but that is what pockets are for right? If you have specific questions please ask I would be happy to answer.
We have a user I want to post to you but we do not seem to have his correct email address he check in every few days so I am sure you will hear from him soon as he checks in regularly. He has a neo is a business owner and race care driver.
We have seen mountain climbers, marathon runners and everything in between with all three diversions. People adjust and adapt and that is an important piece of this puzzle another is the skill of the surgeon with the type of diversion they have done.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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3 years 7 months ago #52332 by DannieC
After reading the article, I see I have 3 choices. I said only 2 because the surgeon I have said he likes the Indiana pouch the least. But im the one who has to deal with it, not him. So if there is anyone out there willing to share I would highly appreciate it. I would like input on all 3. Please remember my first post of my life style. Looking forward to hearing from as many as possible. I'm scheduled for surgery January 23rd 2017. Thanks in advance.

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