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Long Term neobladder and some questions
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.
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6 Replies
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thanks webgurl
yes ive been on the mannose and it seems to do the trick. the ecoli does indeed seem very common and im not so concerned about it. ive got another docs appointment in the morning to discuss further but ive also got annual cystoscopy in dec/jan and bloods etc so will ask further questions at that point. thanks for your reassuring comments
cheers
tim -
Hello TimB,
I too, am a long-term Indiana Poucher. I have had my Indiana Pouch since 1996. I agree….hydrate, hydrate, hydrate! I also take Cranberry and D-Mannose to keep my urine clear. When it is super hot or humid and I don’t stay hydrated, my urine gets funky. I also cath myself and have learned to wash my hands prior to and after cath to cut down on infections.
I don’t think you should be concerned unless you have a fever, cloudy urine, or flank pain. I try and not take antibiotics unless they are truly needed. The other thing I do is get a copy of the lab report after I drop a urine sample. I look to find out:
- Type of bacteria
- How much of the bacteria was cultured
- Which antibiotics are known to kill the bacteria
Then, I Google the bacteria and weigh my options. E-coli is common in neobladders, but it can also be a nasty one to get rid of. I am not sure if you can “cleanse” your bladder using saline and a syringe like me? That seems to clear out most of the muck.
Best wishes!
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Hi Cynthia
Good to hear from you. I’ll definitely be keeping a list. I have popped in over the years but just busy with life! I’ll try to pop in from time to time to see if I can offer anything. I did see we lost a couple of incredible men. The ones I noticed were Zachary and Mike. Massive loss. Both gave me some fantastic support back in the day and I think about them from time to time. I’ll keep a list and mention it to my uro. Same here with my GP. I’m ok with that as long as they fess up then we can work together. Long term neo care here not so good. Especially when you get passed from uro to uro and lose the continuity/accountability. Thanks for the advice and reassurance. I’ll definitely look into it. Presume you don’t dip test yoursel? Kind of sorry I started!Take care
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Tim, Nice to see you! I have an Indiana that is basically a neo without a urethra, I have a navel stoma instead. I have been told they always see white cells and if cultured I am sure it would grow something. I have been told this is normal due to the tissue of the bladder and not to worry unless I have symptoms. I have seen the very occasional small clot but far from a regular basis again I am told not to worry. I had my RC since 06 and did have some UTI’s in the first years. I drink lots of water, green and black tea and some coffee. But I hydrate all day long and do not allow myself to become dehydrated, ever. I should knock on wood but I hope the UTI’s were growing pains.
My GP knows less than I do about my diversion but then she is a general practitioner and has seen few diversions, I save the big questions for my Urologist. I would make a list of my questions and make sure to have them answered if I were you. Remember what I have said is just my personal experience and you could be dealing with something else.
I hope you stay around we do not have a lot of men with Neo’s at the moment and its nice to have someone with personal experience.Hope this helps.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
hi sara anne
indeed. im getting my annual cystoscopy at the end of the year which is about as fast here as I would get to see the urologist anyway. i’m not overly concerned. re the red patches the uro didnt seem particularly bothered but also couldn’t really offer an explanation beyond inflammation. or maybe ways to avoid getting them! ive been consulting Dr Google about ileitus which seems like an intriguing possibility with neo’s made from terminal ileum. i may ask about that. sometimes I think a bowel specialist may have more to offer! just wondered if anyone else had any similar experience re this and the occasional haematuria.
thanks for your response
Welcome back….glad to hear that you are doing well.
I am NOT a doctor, and do not have a neobladder, so of course I have advice to give!! B) I have read multiple reports here on the Forum about “infections” and a neobladder or an Indiana pouch. Since these are constructed from intestines, my understanding is that there are always lots of bacteria present and many doctors unfamiliar with these diversions panic at the sight of “infection” and try to treat with antibiotics.
Think you need to consult with a neobladder expert..not the GP.
Hope someone who has been through this will chime in!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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