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To neobladder or not to neobladder, that is my ?

11 years 4 weeks ago - 11 years 3 weeks ago #21439 by Jeff F
:)

BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008

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11 years 4 weeks ago - 11 years 4 weeks ago #21427 by Jeff F
I went with the ilial conduit and outside bag on 04/30/08. So far so good. My bags only last about 4 days and I have to change them. This could be because I am still fighting the abdominal wound which did not heal. I underwent debridement on 09/11 and, hopefully, everything will close up the way it is supposed to this time. The wound vac dressings have interefered with the bag, since I had better longevity with the bag when I didn't have the wound vac.

It is good being able to hook up to the night bag and not worry about things until you awaken. The occasional leak isn't a big deal. By the way, you mentioned the penis and hoses, et cet. The ilial conduit system is where a piece of intestine is used to divert urine from your ureters to a stoma, which is located about 3 inches to the right of your navel. The urostomy bag adheres to the skin and covers the stoma, collecting the urine.

I think if I had gone with the neobladder I would have had big problems re my wounds dehissing and the problems associated with healing, but who knows?

I am 64 and probably would have elected the neo-bladder if I were much younger. However, I have heard of some serious problems occurring with the neo. This is rare but it happens.I figured Murphy's Law usually applies to me. It does appear most people with the neo are happy with it.

Once I get out into the real world again and start going on trips, I am going to use a leg bag. They attach to your thigh and collect about 1/2 what a night bag does. They attach to your stoma bag just like the night bag does. I had one after a turbo once and it worked really well. They would be good for a hotel room or guest room too, since you just take it with you and don't have to leave any weird appliances around.

Best of luck with your decision.

BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008

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11 years 1 month ago #21394 by ICBadger50
Hi,
I'm 58 and two years ago I chose the Illeal Conduit for four reasons:
1. Shorter surgery, less chance of complications
2. Quicker return to continence
3. Use of night collection system gave me a full night's sleep
4. I was told that if there was a blockage with the neobladder, I'd have to self-catheterized, which I was not about to even consider

Two years later, I'd say I made the right choice. I do sleep throughout the night. Initial experimentation with pouches, barriers, and seals led to a combo that works for me (visiting nurse was very helpful in this regard)--though I only get about 4 days between changes. I can do what I did before without bag interference. While the bag thing is not the most attractive bodily accessory, you get used to it. Outside of at the beach, it isn't much noticeable. I've only had two UTI's in two years, which I think is a bit better than had I had a neobladder--others here could confirm or deny that better than I.

Downsides are travel--I hate taking the collection bottle (embarassment if traveling with others; bulky), so I just make sure I set an alarm to get up once during the night. Also, you can get nighttime leaks if you toss/turn so much and pull pouch/barrier away from stoma. Finally, changing bag adds 20 minutes to your morning routine.

Best of luck in your treatment. Interestingly perhaps: I read a study when I was first diagnosed that said conduit, neobladder and pouch users were equally satisfied with their choices when given a quality of life survey several months after surgery.

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11 years 1 month ago #21244 by mmc
Thanks for the responses Mike and Nancy.

All good info.

Looks like we're going to try BCG or chemo first because of my progression to both kidneys.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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11 years 1 month ago #21243 by balihigh
Here is a woman sticking her nose into a man's discussion but I can so relate to years and years of frequent urination. In 1994 I was diagnosed with interstitial cystitis which causes the frequent urination. Like you I cannot remember sleeping all night long. In fact if I "only" got up 3 or 4 times a night, I felt fortunate. I spent so many nights "sleeping" right next to the toilet because of needing to get up every 15-20 minutes. Interstitial cystitis waxes and wanes so I had some time that was better than others but my life was never anywhere near normal. I was a school teacher and always visited the room between every single class. I got plenty of exercise and was fortunate that my principals understood.

I was diagnosed with bladder cancer in January of this year and have just received my RC. My surgery was Sept. 5 and I am only 3 days out of the hospital so I am just reading these posts today. I actually had no choice but an illeal conduit. At first I was very disappointed but especially after reading all the other posts here about neobladders, I am soooo thankful that I have an illeal conduit. I haven't slept through the night yet, still adjusting from the surgery, but I will celebrate when I can. I made the right decision but it is a very personal one. Good luck to you.
Nancy

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit

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11 years 1 month ago #21237 by mikeg
Hi I'm 59 and had surgery almost a year ago and choose a neobladder at Hopkins. The choice was the right one for me and after 2-3 months I was 90% continent. The decision was a hard one for me and everyone else but the result has been great for me and I have resumed all my regular activities...golf, tennis, and sailing. I missed 2 months of work. I was in good shape before the surgery and it took 3 hours and 6 days in the hospital. It's still weird when mucous comes out when you pee and it reminds me of what I've been through. I went from cat scans every 3 months to 4 months because cat scans can cause cancer:blink: DOH!

Any questions let me know.

Mike Greenberg

Michael
Age 58
Stage T2-T3, muscle invasive
Married to Eileen
2 sons, ages 20 and 23

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