I haven't posted on here for a really long time. I had my neobladder surgery in 2006 (originally diagnosed in 1992/3) and, for the most part it's been reasonably straightforward. the usual issues but nothing major. all bloodwork and imaging has been fine - small bit of scarring in a kidney but nothing progressive. occasionally i would get specs of debris and even a few specs that looked like bloody tissue in the urine maybe once or twice a year. I think i even posted on this here.my surgeon seemed unconcerned about this. about three years ago, some red patches or "bumps" started to show up in the neobladder observed in my yearly flexi. they were biopsied and came back as inflammation - possibly suggestive of infection. The following year in my flexi there were more of them so my surgeon resected them and, again, they came back as negative for anything serious. A few weeks ago, wanting to open up a dialogue with my gp about this and other nagging concerns I had a urine test. this showed white cells on the dip test but nothing on the culture tests. So a few weeks later I got retested and it came back as positive for e coli - a form resitant to a few antibiotivcs. I've been dip testing myself obsessively since then and have occasionally come up with trace haematuria (non hemolysed). reading around this doesn't seem like an uncommon finding in neobladders and maybe it's been there all the time and ive only just started testing. but obviously it's given me pause for thought. ive increased my fluid intake and am also now taking d-mannose as my uti is asymptomatic my GP - quite sensibly in my opinion - is reluctant to dole out antibiotics unless there are symptoms. i may be wrong about that. i have my bloodwork and cysto coming up in the next month and ive booked another GP appt for the next week or so. GPs here in UK tend to have, in my experience, understandably not much knowledge of neobladders so they treat you like a person with a regular bladder. which is unfortunate as they are like your bridge between you and the people who do know what they are talking about i.e. the urologists at the hospital. does anyone out there have any experiences similar to the above or thoughts? Im struggling to find much useful information about long term neobladder management issues of this kind of specific nature.
