Member Blogs

Hi my name is Sharon I was dignosied with Bladder Cancer Dec 2003 finally after a year of going to Dr,s whom seem to think I was crazy. I went thru 2 BCG treatments and it seem to go into remission then in Jan of 2008 came back this time with a vegance. The Dr had me to another round of BCG and it didn't seem to help, so now he has passed me on the another Dr .

So I guess my questions is the new Dr has scheduled me to have my bladder replaced with the Neo-Bladder and gave me this web site to look at. My surgery is scheduled for Sept 4th. After reading the blogs my worry is I don't see where

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Hello, my name is Charlotte I am 38 and have two children 12 and 8 years old. I used to worry about my husband getting lung cancer since both his father and grandfather died at an early age from it. We both quite smoking cigarets 11 years ago. He still has an occasional cigar.

March 15, 2008 saw blood in my urine and made an appointment with doctor for next day. For the next month they treated me for UTI and Kidney stones.

April 16, 2008 now having dark red urine. Had a complete physical and was told I was healthy and was told to hang in there the stone would soon pass. I demanded to

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On Friday, 4/11 my dad had surgery to remove his blader, prostrate, and lymph nodes around the bladder. The doctor was able to reconstruct a NeoBladder from a piece of his small intestine. The surgery was successful and with time he will be able to control his new bladder and function normally.

It's day 3 after surgery and as I had assumed he is in a lot of pain. He has the pain meds with the button to self medicate but he is just very uncomfortable. The nurses say he is doing very good - no fever, BP is normal, and drainage is good. I just can't find words to comfort him. He doesn't want to

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I feel now that I am on the up swing.  I do feel I have had one of the top Urologist in the country.  So many surgeries to fix the fistula because he desperately wanted to save my bladder because of my age.  My Uro is Rodney Appell with Baylor in Houston and the surgeries were done at Methodist in Houston.  All except the hysterectomy and the first repair.  I am anxious to get the Urodynamics done next week to see what they find. I know that the bladder neck was spared during surgery and I have do have a sense of urgency but it just all falls out by the time I get there.  I have every

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My story is quite different from most on this site, but it is the ONLY place I have been able to find anyone who has had their bladder removed and replaced with intestine.  In July 2005 I had a radical hysterectomy and had severe complications.  When I woke up in ICU I kept telling everyone my bed was wet, they said the catheter was just leaking.  A couple of days later the catheter was removed and I immediately urinated everywhere and their answer then was that the catheter had just been in longer than usual and it might take a few hours or a couple of days for everything to settle down.  I

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I had my 8.5 hour surgery on January 2nd, 2008.  Long story short: wound up with staph at incision after surgery, rehospitalized, basically lost 2 weeks of Kegel training time. However, when trying, urine and mucus constantly leaked AROUND Foley anyway, Doctor & nurses too busy for me, still practicing Kegel at home,to no avail.
I've been to almost every story board for women and BC NeoBladder and I know it takes time but I don't EVER GET a "full" or "gaseous" or "feel wind" or "bloated" or "uncomfortable" as the need arises to urinate.  I NEVER feel the urge - 5 minutes or 2 hours. but every

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Hello all my name is Klynn, my husband John has recurring bladder cancer, in 2004 he had a total cysectomy. He has a neobladder he did well with the surgury, had leak 2 weeks post surgury that caused a sisk to form blocking his bowel and had to have a 2nd surgury to reroute the bowel, after a month in the hospital he came home. He rebounded well and was back to work in 5 months living a happy almost normal life.   Fast forward to January of 2006..wakes up New Years morning with blood in his urine. we make an appointment with urologist and they treat him for a UTI. This goes on for 3 months,

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HEY IM STILL ALIVE,

Sorry havent been thinking too much about this forun, been too busy feeling like I already died and thought I was in hell(it was just the Kids playing the Wife up). No seriously(Note that I can now be a bit lighthearted), been nearly 3 months since I had the neobladder  surgery and I must say that the surgeon has done an astounding job. The new Bladder  works 95% like the old one and I am dry at night(mostly). Unfortunately they was a few cancer cells detected in one of the lymph nodes that was removed so apparently the recurrence of the cancer is still 50/50.
Just for

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Time for an update... I didn't realize the storyboard had been transferred to the new format.  So, where was I with my story...

2/22/2006:  Bowel Prep day.  Yuck.
2/23/2006:  The Big Surgery.  I had my cystectomy at the U. of Michigan hospital.  I was in surgery for 7 hours.  It took a little longer than it might have otherwise because my doc didn't get a clear margin on the urethra because my tumor was near the bladder neck.  Knowing I wanted a neobladder if at all possible, she decided to try again and did get a clear margin.  I spent 3 hours in recovery where I apparently got something in my

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When I came home, I still had Ureter stints draining direct from my Kidney to a bag, a Foley cath in my penis going from my new bladder to another bag and finally what they called a superpubic tube to another bag.  The SP tube is just another cath going to the neobladder through your abdomen.  You don’t want to yank this thing, but really you get used to this tube coming out of your tummy!

I met with a visiting nurse who assured me she would help me through any questions, problems etc. that came up and a few days after discharge and the Dr was pulling the stints.  I learned all I needed to

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