Hello,
I'm new to this forum but not new to bladder cancer. Here is my back ground. I was 51 at the time of diagnosis in Oct13, i was shocked, I'm a healthy active non-smoker, who had never had any health problems. I had seen blood In my urine off and on for 2 years prior. (I beat myself up everyday for not seeing a urologist when I first noticed it). The first TURBT found T1 HG several tumors and CIS. Six weeks of BCG and another re-occurrence in April14 with several superficial LG tumors. Another round of BCG w/ interferon. Third re-occurrence in Aug14 again LG papillary tumors. Due to shortage of BCG went to MitomyicinX6. I Was cancer free until March 16, found CIS HG , BCGx6 and then cysto, TURBT seen more LG papillary tumors. This past week had first mitomyicin treatment. I usually tolerate treatments fairly well but I have been a prisoner in my house for 4 days, horrible spasms and in the bathroom literally every 15/20 minutes. After UC showed no infection, the nurse called to tell me a Cystectomy would be the best bet, since I'm not tolerating the treatment. I know this is a huge change in QOL, but my QOL is not so good right now, and for the past 3 years with urgency and frequency.
After my long story, I think it's time to look at an Indiana Pouch. I just want to know if I can still have a very active life with this? I heard recovery is very hard. I'm in sales so I don't have a office, I will be cathertizimg in public restrooms. How do you live with this? How long does it take to cath? Can I still enjoy my life? I haven't stopped crying, Im sad, angry and hopeless. Any help would be great.
Mary