I didn't have a cystectomy but the blood clots, infections, and what seemed like infections but wound up not being infections, led to the discovery that I have positive cytology in the kidneys. That apparently is where the blood clots are coming from. He may want to talk to the doc about getting the kidneys checked by doing the cytology on each kidney. This may be completely unrelated to catheter issues. Nothing showed up on my CT or IVP scans. The primary symptoms for me were blood clots (varying sizes and intermittent) and burning during urination (which seemed like a UTI).
Janet...Medicare has approved 200 disposable caths a month which means you would never have to reuse.....other insurance companies will follow suit. I don't care how carefully you think you've washed those caths you can't see the tiny microbes that can be left behind. Its a start.....but i have seen others with neobladders who have one infection after another even after using the disposable caths..the docs say they are not emptying completely..but you've got to wonder...and where did the doc think the blood was coming from? Pat
We need some input. My husband was diagnosed with invasive bladder cancer January 07. Has a cystectomy with neobladder in February. No signs of cancer outside the bladder at all . He was never able to master voiding on his own with the neobladder and has to cath 4x/ day the entire year. Started w 1 infection last fall and now has had chronic infections since February. They are doing cultures and it goes away for awhile but comes right back. 6 weeks ago he had an episode where he had large amounts of blood when he catherized. Dr did a cystoscopy and found blood clots through out his bladder. cleaned it out, did another CT( which was normal) and put him on abx for 2 weeks. The blleeding was much less but continues to leak . He uses a size 14 French coude tip catheter. We have schooled him continuously in hand washing and catheter washing ..drinking water and I have even tryed to get him on cranberry pills. His Dr is a urologist surgeon who specializes in prostate and bladder cancer( he did the neobladder) and takes care of him exclusively. Any ideas... I am worried.