cystectomy

denistd

HI all, I do not have bladder cancer but do have a bladder that is completely shot, I do have prostate cancer but that is pretty dormant at the moment.The doctor inserted a supra pubic catheter in my bladder when the bladder spasms got too great. Problem is Urinary tract infections, I have one go on anti biotics, clears upand a week later another infection. Urologist says I need to have my bladder out and told me that he would remove my prostate as well. If I do this, and I think it's pretty sure I will, it raises the question will I still get multiple UTI's? Thanks for any advice. Denis

kat2013

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

Rosesforever

Radiation cystitis

hi, I had a radical hysterectomy then 25 external radiation. I have ended up with radiation cystitis a poorly functioning bladder and weak urethra. I’m currently having HBOT. My uro gynecologist is saying my prognosis is poor which means I may need urinary diversion..I’m Having constant UTIs,,, every 3/4 weeks. I’m waiting to see if my doc will do Botox/collagen treatment which may help with the incontenence but not UTIs. It’s been difficult to find anyone who has had any of these challenges so I’m looking for any input. I don’t even know what questions to ask. It’s all very scary. Thanks in advance for any advice, suggestions or guidance. Best wishes to you all. 

TinaLynn73

Missing my bladder

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?

TinaLynn73

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

I had to have several stents and nephrostomy tubes placed in my right kidney. And every single time I had a stent I ended up septic and almost died because I didn't know what was going on. This was before I had to have my radical cystectomy. 

I hope you are doing well. 

Keep your chin up,

Tina

gordr

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

cystotomy

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

 

61psych

TinaLynn73 said:

Missing my bladder

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?

mutual support

Hi Tina,

Sorry to hear your troubles.  I am new to this site so just now see your message. 

I've been battling bladder cancer for 20 months and the current recommendation is bladder removal.  The prostate goes with it.  So i, like you, am tyring to cope with loss of sexual function, already and worse to come.  I'm also wondering about the pros/cons of urostomy vs bladder rebuild.  I'm wondering about your experience with the urostomy bag.  I'm in therapy (psychotherapy) and that helps to cope with the emotional component, especially group therapy.  Anyway I thought I'd reach out.  Hope you see this message and hope to hear back from you.

Bernard