Hematuria after Cystoprostatectomy

Do you mean bright red urine or just brownish/pinkish? I'm 76 (77 next moth), had my surgery in March 2023 and have been dealing with similar issues for the past few months. But it's mostly dark urine, sometimes brown, other times pinkish. I may have 2 or 3 days with fairly clear urine but then it happens again, especially urine from my night bag. I'm on Eliquis and I know that's not the cause but it makes it worse. My stoma produces lots of mucus, sometimes really dark and smelly stuff. I have no other major symptoms but 2 recent urine cultures showed a lot of bacteria. I have been through 2 courses of antibiotics, 2 weeks each. Surgery team suggested I should see an ostomy nurse (I did) and then an ID doctor (I did). The NP is pretty good at taking urine samples right out of the stoma with a catheter, but prescribing some antibiotics was as far as she could go. The ID doctor I have been seeing clearly knows very little about stomas, she just ordered an urine culture and put me on different antibiotics. She suggested I talked to my surgery team (back to square one). I am due to get my follow up CT, chest X-ray and cytology next month. I wonder how many people out there besides you and I are going through similar issues. Regards, Jose E.

We have a few articles on the conditions separately but, unfortunately, not together, We do also have a prostate cancer site at: https://prostatecancer.net/
There might be some more information there for you, or at least a place to start. Above all, just know you are not alone! Let us know if there's anything else we can do to help from here! Keep on keepin' on, DPM
https://bladdercancer.net/symptoms/blood-urine
https://bladdercancer.net/living/diagnosis-cystectomy

Sorry to hear you have a similar problem. The blood in the urine is usually dark red or slightly brown. It’s always there 24/7. After about 2 years of dealing with this problem I don’t think there is a solution. I was at Fox Chase in February of this year with my urologist oncologist for my yearly check up. I had all kinds of scans and scopes done with no definitive results. I got a second opinion from a local urologist. He agreed with my regular urologist. He told me he tried to surgically locate the source and couldn’t. So the bottom line is I’m going to have to bleed the rest of my life unless it gets really out of hand. My regular guy said we will just have to monitor my bleeding. Thanks for your input. Joe

Hello Jose, How are you doing? I am doing good all things considered. I never went on antibiotics but my primary gave a script for them if I did start showing more symptoms such as fever or backache. My primary did prescribe Hiprex to change the ph of my urine to help prevent bacterial growth. I know what you are talking about with external bleeding from the stoma. I was using barrier that was suppose to seal to the stoma without any cutting. Did not work for me. There was a very thin piece of plastic on it which cut my stoma and made it bleed. I stopped using them pretty quick. I have been using Convatec with excellent results. I am still bleeding and see the blood mixed urine drip from my stoma when I am changing devices but not as much as before. My last urine culture came back positive for Klebsiella, which is very typical for me. Every time I tested positive, it was Klebsiella. It almost got me in 2020. I contracted sepsis and went through a night mare of infectious disease intensive care. That is a story in itself for another time. I think the Hiprex is helping but it is not enough. My primary is not sure to treat or not to treat because of the bacteria building resistance to the antibiotics if used too often.
With all that said here is the really good news. On July 15th I will be 2 times cancer free (bladder/prostate) for 6 years. I have to say looking back on all the trouble I had getting here, I am glad I am here. It was a very difficult journey but now I think of it as bumps in the road, though some of those bumps were damn big. It is amazing how you can change with things and still move forward if you let yourself. I remember waking up after surgery knowing full well what to expect and still I cried to myself. At the time it was the worst day of my life. I didn't think I could have felt any lower but as time goes on you learn lessons with hard knocks. The biggest down fall with this type of surgery is the doctors, stoma nurses, and all the other help you get before surgery really don't know life with a stoma. They don't know how mentally crushing this can be for the patient. But there is hope and light you just have to seek it. Plus I am blessed with a supportive and helpful spouse more than anyone can know. I have made it to the proverbial other side. I get up in the morning and I eat, go to work, go swimming, go fishing, do just about anything I want to do. It took about 3 years to work out all the kinks physically and mentally but now I feel good. The biggest downfall is I have to remember to pee. I am cancer free and that feels great. That team of doctors most likely saved my life.
Jose stay healthy and keep moving forward. I hope you solved your bleeding issue. That would be a nice way to start the summer. I will let you know if my bleeding magically stops 😀
Best regards,
Joe