Hello, Nancy! We have all been where you are now and it IS a steep learning curve! The good news is that BCG can be curative in your case....we hope it will be. I was also diagnosed with early HG (CIS), went through BCG and BCG-maintenance and am now almost 9 years out and have had no recurrences. So, you can see, it is worth it.
You didn't mention how many BCG treatments you have had, or how long after the BCG the diarrhea started/lasts.
I usually had this as one of the side effects for about a day after, but then it went away. Nerves, which are natural when you are faced with something new and scary can also contribute. Have you discussed this with your urologist?
Have you had any other side effects?
If the side effects become too burdensome, the dose of BCG can be reduced significantly. Some studies have shown that even 1/10 the initial dose can still be effective, especially if you have had a number of treatments. You might want to discuss this with your urologist if you feel that you cannot deal with this. By the time I finished my maintenance series I was on 1/3 the initial dose.
Sara Anne
