cystectomy

Hi! I am somewhat of an expert on this lol. I had to have a radical cysectomy, after my radiation treatments fried my bladder. All I can tell you is my experience. Since having the cysectomy, I have had CONSTANT infections in my kidneys. This year alone I have been hospitalized 12 times (several that turned septic and were very serious). Because of being constantly on antibiotics, the bacteria have now become resistant, and I am almost out of options as far as that goes. When NO antibiotics work, or if the infections start turning septic again, my doctor will have to remove my kidneys and that means dyalisis(sp?). The reason I get these infections is because of the stents I have to have put into the ureters every few months to keep them open. They are "bacteria magnets" according to my doctor....but we have no choice because of strictures. Without them, the urine backs up into the kidneys. The stents are supposed to last 3 months, but because of the frequency of infection, mine last only about 2 before they must be changed. So I am having to have minoe surgery every 1 to 2 months for that. I know this sounds bad, but I just wanted you to know the truth of what may happen. if you are already prone to infection, this is something you should know. You may want to ask about getting immunogloblin infusions (antibodies) I have also developed CVID, which is when you don;t have enough antibodies to fight infection....so I have just started doing the infusions (where they inject antibodies from healthy people into your blood) I am starting rather late, but if you haven't had the cysectomy yet maybe you could start BEFORE and possibly reduce the chances of infection? I don't know if it can be done as a preventative measure, but ask your doctor. If you have any questions, feel free to ask....as I said, I have been through all of this and just about anything that CAN happened HAS happened to me with this lol. I pray that things are going better for you. Remember too, that every case is different, Some people have no real issues. It's the roll of the dice I guess. God bless and stay strong! Kat

I found out I had a "mass" in my bladder back on October 17 2019

By April 24,2020 I had to have my bladder removed. Cancer had ate through my bladder and pretty much covered my pelvic walls. I also had to have a hysterectomy and all but 1/4 of my vagina removed, due to cancer.

I am having a very hard time coping with my urostomy bag and the fact that I can no longer have sex with my guy. I feel broken and disgusting to look at. (I'm 46)  

I don't know how to handle or get past the bag and my lacking vagina. Any advice?

kat2013 said:

Cysectomy Answers

Hi! I am somewhat of an expert on this lol. I had to have a radical cysectomy, after my radiation treatments fried my bladder. All I can tell you is my experience. Since having the cysectomy, I have had CONSTANT infections in my kidneys. This year alone I have been hospitalized 12 times (several that turned septic and were very serious). Because of being constantly on antibiotics, the bacteria have now become resistant, and I am almost out of options as far as that goes. When NO antibiotics work, or if the infections start turning septic again, my doctor will have to remove my kidneys and that means dyalisis(sp?). The reason I get these infections is because of the stents I have to have put into the ureters every few months to keep them open. They are "bacteria magnets" according to my doctor....but we have no choice because of strictures. Without them, the urine backs up into the kidneys. The stents are supposed to last 3 months, but because of the frequency of infection, mine last only about 2 before they must be changed. So I am having to have minoe surgery every 1 to 2 months for that. I know this sounds bad, but I just wanted you to know the truth of what may happen. if you are already prone to infection, this is something you should know. You may want to ask about getting immunogloblin infusions (antibodies) I have also developed CVID, which is when you don;t have enough antibodies to fight infection....so I have just started doing the infusions (where they inject antibodies from healthy people into your blood) I am starting rather late, but if you haven't had the cysectomy yet maybe you could start BEFORE and possibly reduce the chances of infection? I don't know if it can be done as a preventative measure, but ask your doctor. If you have any questions, feel free to ask....as I said, I have been through all of this and just about anything that CAN happened HAS happened to me with this lol. I pray that things are going better for you. Remember too, that every case is different, Some people have no real issues. It's the roll of the dice I guess. God bless and stay strong! Kat

Sorry to hear about this issue. I am going to have a removal and need to decide on the illeal or the stuber. Any thoughts would be appreciated