In 1996 at the ripe old age of 45, I was diagnosed with bladder cancer. I had symptoms of frequent and painful urination for over a year and was treated for bladder infections.
For four years I was treated with 2 courses [one course=6 weekly treatments] of BCG, one course of AD32[Valstar} and 2 courses of keyhole lympet [KLH]. All my biopsies would come back positive for CIS. Feb.29, 2000 I had my bladder removed at M.D. Anderson Cancer Center and received a Studer pouch (neo-bladder attached to the urethra). I was the first woman to have this surgery at M.D. Anderson, they had been doing this surgery on men for some time.
I was in surgery for 8 hours. The surgery is complicated, but they also have to wait for the results of pathology/biopsies to be sure the cancer hasn’t spread before they actually remove the bladder. I was out of bed the following day, the only real pain I experienced was rolling out of bed. I was given a morphine drip and it worked great. I was fully capable of taking care of myself when I came home 7 days after surgery. Sixteen days after surgery I was vacuuming, 19 days after surgery I took a 2 day trip to a Louisiana casino and played nearly around the clock. By the eight week I was back to work and resumed all my normal activities.
That’s the good news!
About one week after all my tubes were removed I became totally incontinent. I went from a panty liner to a full diaper. My doctor had no clue to what the problem was so he referred me to a doctor who specialized in incontinence. She discovered I had developed a fistula from the neo-bladder to my vagina.
A fistula is an abnormal passage from one hollow organ to another. Fistulas are said to be rare and very difficult to repair. It took 2 years, 3 different doctors and 7 surgeries to finally repair my fistula.
I came real close to having my neo-bladder revised to an Indiana pouch, but now that everything is working correctly I am very pleased with the Studor pouch, it’s very close to the original. I hardly ever think about it. I usually get up once a night to urinate and between 2-5 hours during the day depending on how much I drink. I usually irrigate every 7-10 days with saline solution but I am not sure it really necessary. I have no leakage, and I did not do any kegals.
Another complication I encountered was a hernia. Because of the leakage (which I couldn’t stand) I would sometimes try to urinate every 15-30 minutes to keep the bladder empty. Because of all the straining I developed 2 hernias. After this I started catheterizing and found it quite easy. I had the hernias and final fistula repairs done on 4-10-02.
Today, I urinate normally and will occasionally catheterize at home, it’s very passive, and I don;’t have to utilize the abdominal muscles. After having 5 surgeries where my stomach was cut open, my muscles are weaker than most. I don’t want to give the impression that it’s difficult to urinate ‘normally’, because it’s not.
I understand that doctors now place a patient’s own tissue over the vagina to prevent a fistula from forming.
I do believe that my complications could have been prevented, but that is hindsight. Bottom line is: having your bladder removed is not that bad, having a neo-bladder is ideal. And it is best to be sure your surgeon has performed many successful surgeries of this type.
I would be glad to correspond with anyone,
Linda
lindaware1@verizon.net