Living with a Neobladder, please share your story.

1 year 4 months ago - 1 year 4 months ago #59250 by Boat
I'm 9 weeks out and after initial recovery foley I have never self cathed and in fact my Doc said, "what?" when I asked him about self Cath. He said, why? Only if something troubling would require it, and he doubted there would be any.
As far as mucus, it's not as thick as semen if you stay hydrated.
Drink 8-10 ounces an hour, walk a brisk 1-2 miles a day minimum.
Eat well. (Yes, I use Tobasco sauce on my eggs! )
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1 year 3 months ago #59305 by safetypro
Thank you for this string. Today marks 30 days since my surgery, just got the foley removed today and one more week with a capped neo-bladder tube, just in case... Last 3 days experiencing constipation, even with Metamucil and prune juice. Sounds like I need to up my fluid intake as well as more walking. Other suggestions are welcome. Am told to set my alarm for every two hours to “go”. Seems to be quite the feat and I’m exhausted. What else do I need to do? Thank you in advance!

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1 year 3 months ago #59325 by falcon
You seem to be doing well. You should find that the bladder will stretch over time and you can last longer. I can go about 4 hours now. You might also find over time ( and its years) that your body starts to develop the ability to detect a full bladder, almost like it did with a normal bladder. It seems that the weight of a full bladder can trigger nerve endings to send signals to your brain, not unlike the tingle you used to get.
In theory removing about 9ft of the colon to make the bladder should make little or no difference to your system. But in practice, I found that it certainly did. You might get back to normal soon, but as my system recovered it got into a cycle that has remained almost the same for over 20 years. Three to four days of constipation, 3 to 4 days of normal stools, 2 days of loose urgent stools finishing in diarrhea, which cleans me out, then the cycle starts again. Surgeon has never been able to understand it, but it has never changed. It can be a nuisance, and occasionally embarassing, but never seems to have done any permanent harm.

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1 year 3 months ago #59326 by safetypro
Thank you, Falcon, for your post. I’m attempting to eat “normal” but still only on small amounts at a time. Trying to maintain a daily Metamucil or similar but tends to build up gas pains before I get relief.

I know everyone’s system is different. To all in the group, are there foods I should stay away from while just starting out or just “power” through it?

My neo-bladder tube comes out Monday so will be healing that up and just going “normal” every couple hours. Somewhat anxious on the process but thanking God it is all working like it is supposed to work.

Thanks, again!

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1 year 3 months ago #59332 by falcon
A heads up, you may not find that control comes immediately. As well as the normal problem of learning to control the sphincter muscles, post surgery the muscles may be at their weakest. Don't panic, stick with the exercises. Read through the posts here to see advice from myself and others on this tricky area. I was hopeless for the first couple of weeks, but suddenly it started to work. So well in fact that I got into the bad habit of sometimes forgetting to 'go' for 5 and 6 hours. My sphincters got so strong that I sometimes got sudden pain from backing up into the kidneys before any leakage.
You have to be cautious with alcohol, because even a moderate amount makes everything (including those sphincters) relax! And that can cause embarrassing leakage.
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