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Living with a Neobladder, please share your story.

9 months 1 week ago #56417 by lee83
Thanks for your advice. It really helps. Many people told me the same and I also can't imagine myself spending rest of my life with a bag hanging out of my abdomen. I defly want to hear more from people before I make my final decision cause once I make the change, there is no going back for the rest of my life.

So strictly speaking, condom catheter is not a catheter, it's just a device to catch the urine so you don't wet yourself during the night? In other words, you can't empty your bladder with it?

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9 months 1 week ago #56413 by nevadajeff
A condom catheter is just like a condom but with a hole and tube at the end which connects to a urine collecting bag. Google "conveen optima". That is the brand I use. They come in different lengths and widths and the material and adhesive is not irritating. You just need to get your size right and you will not even know it is on. Just like wearing a very comfortable condom. Your urethra is not involved. I was told that the military special forces uses this brand when they are stuck somewhere not being able to move for long periods of time like the snipers.
The benefit to the condom catheter once you get it is right is that you get a full nights sleep. You just empty the bag in the morning. If you are outdoors person it is really nice not to have leave a warm sleeping bag to pee in the middle of the night.
Do not let the unfounded fear of frequent catherization make you choose another form of diversion. You will be making a big mistake, especially at your age. It just is not going to happen. Out of the 100+ people in my monthly support group here in Vegas I would say 1 or 2 have to catherize frequently and they are either much older (70+), or out of shape couch potato type people with other medical conditions.
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9 months 1 week ago #56404 by pete172
lee, I'm going on 65, I have my neobladder 14 months now. My tumor was Hi grade and my cancer aggressive. 12 weeks of chemo before the surgery. It's a walk we hear have all taken and you'll do fine. It's just a new street. There's a lot of info on this page, so read back. As far as catheterizing, it's not like the tube they use and leave in. It's much thiner and you'll be shown how to use it. I used the disposable pre lubed and used more lube and it's only temporary. It is only in the beginning until you learn how to train and use your mussels to keep that fluid moving. Stay hydrated, drink, drink drink, special in the beginning, when you come home with the catheter in with the bag. Keep that mucous following. Your young and it has been for me the best way. Reread nevadajeff, you do have to work at it. We'er hear for you. All the best, and God Bless. Stay in touch.
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9 months 1 week ago #56402 by lee83
Thanks so much for sharing your experience. I'm more than willing to work hard if I can empty my bladder using only my muscles but I'm not sure how well I would handle the pain especially in that area. My doctor told me though he'll have to remove the entire prostate due to the aggressive nature of the cancer. Would this help? Also does the condom catheter work the same as the regular catheter? Is it more gentle or less painful on your urethra?

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9 months 1 week ago #56400 by nevadajeff
I have now had my neobladder for almost 1.5 years. I had the same fear as you when deciding on diversion choices. I am a very healthy 57 year old who loves trekking, scuba diving and skiing. I love anything having to do with the water and had just finished sailing my boat around the world before the cancer diagnosis. Very outdoorsy. I would rather be dead than compromise my quality of life and not be able to do the things I enjoy. Quality versus quantity. Neobladder was the only option for me. Dealing with a stoma was not something I wanted to do. When they did my RC they only took a part of my prostate so catheterizing is still painful. At your age they will probably do the same. My doctor told me going in to forget most everything negative you read on the internet regarding Neobladders. He just retired from USC Keck and was one of the pioneers of the Neobladder procedure. He was right. A Neobladder takes a lot of work. If you work hard forget about hyper continence and incontinence issues. If you are not a hard worker then take the easy way out with one of the other diversions. You will need to spend months with a physical therapist that specializes in strengthening the pelvic floor muscles and teaches you how to control everything in that area. You will need to do daily exercises that keep the mucus flowing, your neobladder emptying properly to eliminate UTIs and strengthening the muscles down there for control. You will need to stay in shape. More fat around the midsection makes it more difficult to work the muscles that now allow you urinate. Bottom line is to forget about catheterizing if you follow all of the above. Learn to do it just in case of an emergency but don't worry about having to do it frequently. I use a timer and urinate every two hours. Never had any day time incontinence issues. I got tired of waking up every 2-3 hours at night and now use a condom catheter. Comfortable and able to sleep a solid 8 hours without getting up.
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9 months 1 week ago #56399 by lee83
Thanks for sharing. I'm hoping to hear from people with neobladders though since that's the one I'm most likely getting. And I've never imagine myself putting a tube into my penis to drain the bladder I can only hope it doesn't hurt as much.

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