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Living with a Neobladder, please share your story.

1 month 2 weeks ago #55225 by pete172
Hello All, today is 7 months with my neobladder. The good, I feel great, exercising every day and doing a lot of walking. Still cauterizing once a week, for irrigation. And still passing a good amount of mucus. The not so good... I still don't have control. I'm doing the kegals every day and as often as I can think about it, even when I'm walking. Does anyone have any advice, or the same experiences. Somebody tell me it's going to get better. God Bless.

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2 months 22 hours ago #55123 by uyoeli
Four months after surgery, my experience with the Neobladder has been extremely positive. First month after surgery you are with a bag, so I can compare - Neobladder is so much better - now I look and feel completely normal, as if nothing happened. The main concern with a neobladder is continence; I was in full control during the day in about a week. I am a light sleeper, so whenever I wake up at night (which can be 5-6 times), I just go to the bathroom to play it safe. At least in my case, the neobladder is all positives with no negatives.

While I was warned before the surgery that incontinence can last for many months, the first visit with the WOCN department at MD Anderson (Wound Ostomy Continence Nurses) the story sounded very different: they said first week hold for 2 hours in the day and 3 at night, the following week hold for 3 hours in the day and 4 at night, and within a month they expected me to have full control. I am in no position to know what is "normal", but I suspect that for the majority of us, incontinence is overcome (with a few accidents here and there) in a matter of a few months. Again, while I am not expert, it seems to me the problem is similar to when just the prostate is removed, and no one suggests an external bag following prostate removal.

While everyone is different, based on my experience I highly recommend having a neobladder, MD Anderson, and Dr. Kamat

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2 months 5 days ago #55066 by pete172
Hi nacras52, thank you for sharing. It's been six and a half months now and I do the kegles everyday a few times a day. Still the more active I am the more I leak, so I work through it and deal with it. I'm hoping to start playing golf again now that the weather is getting better, and doing a lot of walking. How long before you saw improvement? It's really good to know your doing well, thank God. It's great to be alive. Stay well and thanks again.
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2 months 5 days ago #55061 by nacras52
I also am living with a neobladder after having a radical cystectomy 8 and a half years ago. They told me at the time that if I did kegal exercises a few times a week that I would be able to at least help control my incontenance. I am finding that by staying very active playing sports and exercising that I have a very small amount of leakage. I too thank my surgeon who has been there for me all these years and I hope for many more. I hope your incontenance
improves.
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2 months 5 days ago #55060 by nacras52
Hi I was diagnosed with stage 2 bladder cancer in 2009 and had to have a cystectomy. I was given a Neo-bladder and told to do kegal exercises to help with incontinence. It has been 8 years and I do not have to wear anything for incontinence. Every once in a while I will have a small amount leak but very little. I think the kegal excersises really helped. I too thank God every day and am still very active playing competitive handball racquetball and all kinds of other sports. Keep yourself as active as you can it helps a lot
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2 months 3 weeks ago #54984 by pete172
Hello All, bear with me, I guess I just need to talk. We blew out the candle last night {1}. It has been a year since my diagnosis. And last weeks visit to the doctor was all good, no sings of any new cancer. So lookout world. Monday will be 6 months with my neobladder and my pal INCONTINENCE. I know, you told me, be patient. I am and I try to keep smiling. It's just that I don't see any improvement. I'm exercising every day and feeling stronger. There were a lot of complications right from the get go and I thank God every day I open my eyes. I look forward to a long happy life with family and friends, spending my pension and social security. HAPPY EASTER / HAPPY PASSOVER GOD BLESS AND GOD BLESS OUR DOCTORS... Gary, if your out there, how are you doing?
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