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UTI’s
Is it common for people with neo-bladders to get UTI’s? I can’t help but wonder how you can get an infrection in a “fake” bladder.
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29 Replies
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My husband actually didn’t have scar tissue, but a peice of soft tissue partically occluding the urethra(urine exiting the bladder)They could remove this with a cystoscope in the office or under general(it took about 5 min. under general). It sounds like many people (10-15%) have scar tissue that can be removed(sometimes this is permanent and sometimes it slowly comes back over time and need to be repeated. The resident said the skill of the surgeon is to remove the rigt amount not to much or to little of the tissue. Constant dripping UTI’s fatigue were all symptoms that large urine residuals were casing.(I assume his bladder was emptying due to the large amounts of pads he was constantly saturating.(The overflow would just constantly drip with no pattern attained). The scope to remove tissue worked wonderful, We could have diagnoised it 5- week earlier if we knew what we know now. Hopefully this helps someoneelse get help sooner. Ureter(where urine enters bladder) from the kidney)(this was not our problem, however large residuals over time can damage ureters, hopefully no damage was done.)
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Oh, yeah, I forgot all about that leakage test. I had to go and have that done before they would remove the cath. They used what seemed to a 1/2 gal of icewater into my neo. Well, it was leak free and like I said in chat the volume and rate tests and ultrasound are routinely done at the beginning of every visit. Seems like it would have to be done continuously to check with a new neo and to watch for scaring.
As far as followup, He advised me, before I left the hospital to get multiple opinions from diverse oncologists regarding a followup protocol. All were in general agreement as to starting on three months and then switching 6 months until 5 years and annual thereafter. I got opinions from three and picked U of C to do that follow up oncology check with CT scans and blood work. That result is also reviewed by my Uro. This is separate from the work the Uro does in monitoring the Neo and my progress on that front. It was weekly, then biweekly then monthly then 3 months and now is my first 6 month. Th oncology test and check was 3 months for the first couple then they backed it off to 6 months after the last time.
It seems to me that I am being followed closer.
Did you get the cathe out today. Let me know how it worked for you on Sunday.
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Carb…have to ask who is taking care of your husband? Follow ups should go on for up to 5 yrs. My capacity was checked after my suprapubic tube removed. CT scans every 6 months for 5 yrs…Chest x-rays once a year…blood work every 6 months including a serum cholesterol for Bl2 deficiency.
Where are you located?
Pat -
Sounds like your getting excellent care. How often are your followups? After removing the suprapubic catheter they told us he could go back to work in one month/and to see him in 2 months.(No ultrasound or any test were done.)I read on the internet that after they remove the suprapubic catheter they run some test to make sure there’s no leaking or other problems.They said no tests were neccesary and everything was going perfect.I brought in a sterile urine specimen and asked them to run it (due to a recent temp.strong smelling urine and complete incontinence, constant dripping 12 pads daily). They didn’t even measure any urine output or residual. We were very detailed on symptoms of constant dripping, no pattern, frequent temps. Calling residents daily at times asking about temps.ect. when it got to flank pain they put him on antoher round of antibiotics. I am a nurse and have really stayed on top of it. Hopefully this info can help someone avoid what weve been through.I think things should be going in the right direction now. It’s tough to learn the hard way but then you appreciate things more when they do go right.We have no scheduled Follow up at present. I asked them if we should make an appt. in 3months? 6months? 1year?. They said we don’t need to see them at all unless we have problems. Can’t change the past looking forward to the future and making the best decisions with the information we have.
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Not at Uof C. It was done in the dr.s office. I am using U of C for follow up on the cancer. I get a contrast CT of the chest, abdomen and pelvic region in the morning and bloodtests and a dr. review in the afternoon.
The rate and volume is part of my regular Uro visit in Highland Park. Kinda’ neat to watch the little chart print out as you are going. I started using it at the first visit, which was one or two weeks following the removal of the cath from the hospital. It is done at each visit followed by the ultrasound before the dr sees me.
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Was this procedure for measuring volume and rate done @ UofC, and how many weeks post op were you when you first used it?
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Every time I go to my Uro’s office, the first thing I do is void into a machine which instantly charts and measures both total volume and rate. I watch the chart print as I am going. This is immediately followed by an ultrasound of the bladder to determine the residual.
That is how the doctor was able to determine there was probably scar tissue forming. He said it is not unusual and they would use a laser, which they had in the office to burn away the scar tissue. He also said he would do it very conservatively so I might have to do it again.
I was quickly scheduled and the actual procedure took about 15 minutes. I had a catheter for 2 days. It was done under a local and I watched the procedure on the screen. While I couldn’t drive home, I was really fine after it.
I am somewhat surprised that many people are getting a number of courses of antibiotics without result. I was told that if I would continue to have a problem I would be hospitalized to have a much stronger course of antibiotics infused to put an end to it.
Mike, I wouldn’t bet on it showing up on the CT scan. I was getting those regularly and that was never mentioned. They always used the the rate, volume and ultrasound to diagnose the issue.
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Actually the scar tissue is at the urethra not the ureter(by kidney)overtime the scar tissue can sometimes build back up (but not always),the doctor told me the initial scarring happens in 15 % of cases. The urine doestn’t have problems getting in the bladder just getting out. A 2- 10 ml residual would be as good as you can get,a large residual is what causes the infection(my husbands was 360ml thats a full bladder)because the urine just sits there and never empties.Typically residuals are there 50-100ml (would be my guess,the less the better) trying to completely empty once a day by taking time to sit stand? (my husband can tell this part)I read may prevents stones.
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I know Johns Hopkins has a green light laser for removing scar tissue from the ureters…..so apparently it can be done………Pat
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Hmmm… This is interesting information. My neobladder was done on 10/9/08. After being pretty much fully daytime continent for a while (except when I was just waiting a little too long) I started having some on and off minor leakage throughout the day and I’ve noticed diminished flow to the point that a lot of it more like a dribble than a flow. Also, it takes about 5 minutes or so before I think I’m pretty much emptied out and it used to go much faster.
Wonder if I have some scar tissue between the neobladder and the urethra.
Well, today I got a with and without contrast abdomninal and pelvic CT, chest xray, urine cytology, chem panel and CBC done.
This is all in prep for my upcoming uro follow up the second week of June.
Hopefully, if there is scar tissue, it will show up on the CT scan. I can live with what I have, but it sure would be nice if it could be better.
My last uro visit was four months ago and they checked my bladder after emptying and I only had either 2cc or 10cc (can’t remember for sure) but they said it couldn’t really get any emptier than that.
Thanks for posting this. It’s helpful info that I will certainly be asking my uro about.
Mike
PS: I have my CT scans and xrays on CD. Wish I could read the darn things. :)
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.carb…….can’t they go in there and laporascopically remove the scar tissue blocking the kidney.????????Pat
The uti’s and incontinence were probablly being caused by incomplete emptying of the bladder due to scar tissue at the junction of the urethra and neobladder. He did have 2 urine cultures done to make sure we were on the right antibiotic, but due to the bladder not being completely emptied the uti would just continue. (a 360 residual in the office after voiding)A cystoscopy was done and hopefully this will clear up the incontinence issue and (residuals)the UTI’s. I don’t know why they never checked for residuals 1 month ago at our 1 month post op visit(His symptoms were there although I wouldn’t have known it to be this cause back then)frequent dripping inbetween every 2 hours of voiding, which most of the time produced no stream but just dripping for his void. He had to use a texas catheter to obtain a culture. On antibiotics he could get some kind of pattern such as a void of 75-200ml and that was with 10 – 20 minutes of attempting to void. (calulating the math thats an average of 2 1/2 a day just to urinate,plus changing 12 pads)Hoping for a brighter future, thanks for everyone’s tips and concern and letting me vent.I’ve learned so much scrolling through these forums. :)
The acidopholus or yoghurt helps repopulate your bowels with “good” bacteria.
Antibiotics can kill the “good” bacteria along with the bad.If your husband is having fever and flank pain and those other symptoms, then they should really culture a sample to see what it will react to and then those antibiotics should be prescribed.
You have to be very careful with antibiotics so that you don’t wind up creating antibiotic resistant strains of the bacterial infection.
I’d follow up with the doc and ask how the same antibiotics are supposed to fix it if it’s coming back within days of completing the course.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.I was having some issues with multiple UTI, although they were not too severe. There was no pain but a little cloudy urine. My GP was giving me antibiotics and my URO was testing me each visit and also treating but suggested that not all neo’s ended up sterile and the UTI’s wouldn’t necessarily need treatment. However if they started to get more severe they would consider hospitalizing me for infusion of antibiotics.
Please understand I am paraphrasing not quoting him.
However, I received a very heavy dose of antibiotics (type escapes me now but it was 875mg twice a day for an infection associated with a root canal. That brought about very heavy diarhea which was an extension of an issue I was already having anyway. When I called the dentist, he suggested using acidopholus or yogurt to reverse it. Frankly, it worked very well and all the loose bowel movements I had been having are almost totally gone. I also havent had a UTI for several months now. Just wonder if the heavy dose knocked it out. Will find out for sure in a few months at my next uro visit
carb……naturally…..cranberry juice and yogart even if you have to disguise it!
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