Long Term neobladder and some questions

5 years 7 months ago #52297 by timb
Replied by timb on topic Long Term neobladder and some questions
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

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5 years 7 months ago #52292 by Webgurl
Replied by Webgurl on topic Long Term neobladder and some questions
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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5 years 7 months ago #52252 by timb
Replied by timb on topic Long Term neobladder and some questions
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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5 years 7 months ago #52251 by Cynthia
Replied by Cynthia on topic Long Term neobladder and some questions
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

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5 years 7 months ago - 5 years 7 months ago #52248 by timb
Replied by timb on topic Long Term neobladder and some questions
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

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5 years 7 months ago #52245 by sara.anne
Replied by sara.anne on topic Long Term neobladder and some questions
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
Forum Moderator

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