10 Weeks post-op w/ a neo-bladder. I was experiencing lower back pains that came in waves as well. It was like a cramp that surged for several seconds then gone. The pain was too low to be my kidney and having stones in the past, I knew that was not it.
Make a long story short... after several days of these cramps coming and going and suddenly I have a low grade fever. Called the Doc ad he said "Cath now and twice / day for a couple of days. Seems I was not empting all the way so the volume slowly built up.
All is well now but it is true, neo-bladder can = more UTI's
Believe in yourself,
RC w/ Neobladder 8/22/06
Thanks for your post. It's comforting to hear that someone has been having similar experiences and in good shape despite them. We went to the ER last night as the fever escalated again, and eventually had a bag of levaquil pumped through. So, another UTI with E.coli as the likely culprit. Not sure where it's coming from... However, I read him your comment and it was very encouraging for him to hear. Thanks again!
I had my surgery (RC w/neobladder) 2/2004, and I had five similar events from April 2005 thru January 2006. I had the high fever (103-104+) and also very severe headaches that increased in intensity as the fever increased, and my first episode (I initially thought I had the flu and that was the reason it took me so long to get to my doctor about it, and also why I was so very ill --- dehydrated and barely able to stand up for more than thirty seconds at a time) took me to the emergency department with eventual admission to the hospital. All tests except the urine culture were negative, and the urine culture wasn't accurate because I'd been started on an antibiotic prior to the culture being done (about 36 hrs prior).
It wasn't until my third episode that we actually got a urine specimen prior to any antibiotics being given (since the fever and HA were my only symptoms the second time it was felt the antibiotic should be given before things got at bad as the first time), and that culture showed there to be a significant UTI. Just after my fourth episode I started having occassional flank pain that radiated down to my bladder, at first one side and then the last time it was both sides and lasted for about six hours. My urologist decided it was probably due to having mucous left in my bladder when I might not have emptied completely, this then causing the infection, and I think my flank pain was due to my bladder not being able to drain because of a mucous plug (this happened twice), and then when my bladder was full, the urine that was in my kidneys could not drain. That's what I believe, although I'm not sure my surgeon believes that part of it. I've been more diligent about emptying my bladder completely, and if I have any incling of a problem emptying I irrigate my bladder to make sure there's no mucous plug blocking my urine flow.
My last episode was January of this year, and it seems to me that I'm doing okay for now, and I hope things continue as they are. I recently had a cystoscope because of blood in my urine (although I didn't have any other symptoms), and my urologist/surgeon remarked at how great it looked inside (I guess he was admiring his work). He thinks I might have had the beginning of a UTI and that I caught it before it went too far, so that might have actually been a sixth incident, but I didn't have the fever and headache with it.
I think there are probably many people with neobladders and pouches that can tell you about UTI's since their surgery, and you'll probably get more responses to your question about your Dad's situation. There can be several different things that could cause your Dad's symptoms, and they don't necessarily have to be the ones he's worried about. It might just be something more along the line of what my situation was, so tell him not to worry too much and he needs to give his body time to heal from his surgery and to let his body get used to the change in his urinary system.
I hope this is of some comfort, in that it's something I've been able to handle fairly easy. Keep us updated to your Dad's situation.
First of all, I'd like to say I'm so impressed with this resource and this community - thank you. In June, my dad (55) had an RC due to 2 T3 muscle invasive tumors, followed by a neobladder done at UCSF. Subsequent infections and abcesses (which required drains) have pushed chemotherapy out (he finally began his first treatment last week). My question/concern: he has recurring kidney pains several times a day that come in a wave that increases in intensity and then passes. It creates a burning sensation and he must void immediately. There is also a persisent fever that occasionally elevates to over 104-105 degrees, a very dangerous level. At this point we go to the ER and he is admitted until he is fever-free for 24 hours. They are very vague and don't seem to really know the source of the infection. However, this scenario repeats itself continually. No one seems to know what the problem is. His fear is twofold: A) there is something very wrong with his kidney(s) and at some point, they will shut down, the fevers will persist until it reaches 106 again and he'll have a stroke that he will not recover from. Is this situation familiar to anyone out there? It seems similar to cleeramsey's post on Feb 18th. What to do?