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Reconstructed Neo-Bladder Problems

Postby JCC on Mon Apr 16, 2012 4:30 pm

Hi Everyone,
I am just wondering if anyone has had neo-bladder surgery and what the outcome was for them. I had a reconstructed neo-bladder in 2006 and thought I would eventually become fully continent but am still suffering incontinence 24/7 and self catheterising 3 times a day and doing bladder washouts every morning. I am still leaking (heavily) and my continence nurse has assessed me and provided pads with net pants during the day and nappies at night to help me. I sometimes get a bit down about things as I thought the new bladder would be an improvement and have seen that some people can manage without pads etc. My urologist has said that I can't have any more operations and it's simply about managing my condition the best I can with help from my nurse. Thank you in anticipation of your replies.
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Re: Reconstructed Neo-Bladder Problems

Postby alison12 on Mon Apr 16, 2012 5:58 pm

Hi JCC and welcome to the forum. I have had surgery before, but not similar to the surgery you have undergone. However the surgery I did have turned out to be very bad and I had a lot of corrective work done. The consultant I had was very well known and top of his field and what this meant was that no one in the legal profession would touch my case. But at least my consultant who was an absolutely lovely man (and perhaps one could say I was just very unlucky as all surgery certainly does carry an element of risk) was very keen that together we went and spoke with other top professionals to see what they would advise. In the end another consultant took over with my consultant watching in on an operation that I was given, as it was a new method that my original consulant wasn't familar with. And good news it really did help me. So - what I am saying is that one thing I have learnt is that no consultant however top of their field they might be knows everything and suggest it might be an idea to speak with others as well. I do certainly agree that learning to live with and manage one's condition is a very positive way forward in helping with day to day life though.
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Re: Reconstructed Neo-Bladder Problems

Postby kimba007 on Tue May 15, 2012 6:45 pm

HI can i ask what surgery you had ?? I had clam cystoplasty 7 years ago
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