I was diagonosed with BC on Sept.23,2005 which made me a 47 year old female. The Dr. that diagonosed me told me I was not a canidate for a neobladder. He told me I would have to get a stoma or bag due to my situation. I had around a 4cm sized tumor that was transitional cell which had gone through my bladder wall which made me a Stage 3 T4a No. I had been c/o of frequent urination to my gyno and family Dr. for months. I also had irregular periods and had developed high BP. My Dr.’s nevered worked me up. They all blamed it on menapause. Unfortunately, I was the one that found myself urinating blood and told them to check me for a bladder tumor.
My story is very long but, I will only try to just touch on the important parts. I traveled to six different hospitals for the right surgeon and oncologist. Trying to find out if I was a canidate for a neobladder. This was a education in it’s self. Out of the six hospitals I went to only two of the places performed neobladders, the other surgeons didn’t know how and just said I wasn’t a canidate. It ended up I have my oncologist at Sloan Kettering and my surgeon at Johns Hopkins. I was treated with chemo for three months (Cisplatin and Gemcitabin) before my surgery. I had my surgery on May 25, 2006. A neobladder was created and a total hysterectomy with around 30 lymph nodes removed,which were clean(thank God).
I was in the hospital for six days. I was sent home with a foley in for two weeks. I had problems with my bowels and gas post-op which could be a story in it self. I live about four hours from the hospital where I had my surgery so the ride home was a little scary.
But, I am skipping to my foley being removed and I leaked non-stop. I started doing Kegel excerises like crazy and even went to a PT girl for incontence. I kept getting bladder infections with the leaking. Well, eight months later they thought I had a vaginal fistula. I just had it repaired three days ago and now have a foley in again for two weeks. Is there anyone out there that has experienced this? And if so how are you since they took the foley out?
Up date(March 9): I found out when I visited Dr. Wright post surgery that I didn’t have a fistula. I had a leak where they connected the neobladder and the urethra so they just needed to restitch it. The Dr. explained I should stop leaking totally in about three to six months. When he removed my Foley on March 5, I had good results. I have very little leakage through out the day(only need to wear a panty liner) and I can hold my urine for about 1 1/2 to 2 hrs. without leaking unless I drink coffeee, then I have to go 1/2 to 1hr. and I started doing my Kegel exercises again. I understand it is like starting all over again,and I will have to work on getting up to 4 hours. I still have to wear protection at night, but not diapers. I understand at night is the hardest time to be come contient, but I came this far so I guess I can be patient. Things are so much better now, thank God.
Dixie B 🙂