Post Neobladder surgery: Infection or the flu

Hello All:

Can't tell you how much information, positive motivation and empathy is shared on this board. Grateful we found you and have posted support a few times but now have a question.

My husband had his RC and neobladder on August 7th. For the past 9 days, he's had on and off fever and aches. We bought those test strips for UTI and came out positive for high white blood cell count so thought he had an infection. Called the doctor's office who confirmed that neobladders will always produce high WBC and thought my husband had a bout of the flu. Here it is a week later and his temp is back up a bit to 99.5 with tiredness; over the past week, his temp has waxed and waned from normal after Tylenol to 101.1. I'm thinking this is going on too long to be flu and besides, he had a flu shot three weeks prior. Has anyone had a similar situation post-RC w/neo? I know you can't answer definitively what's going on, but wondering if anyone has had similar situation. We can deal with flu; infection is another story.

The path on his lymph nodes and prostate is clear. Can an infection set in this long after surgery? He's voiding fine, on schedule and drinking his fluids.

Thanks so much.

Debbie

By sunshine604
Posted October 25, 2009 at 12:33 am
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Hi Debbie -
Not being familiar with post-neobladder problems, I can't offer much advice, but it does sound like he needs to get checked out. You'll hear from others who are more familiar with the side effects of neo (I have the ileal conduit).
Wishing you both the the best! Keep us posted.
Eileen

By cat22
Posted October 25, 2009 at 12:37 am
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Like Eileen, I don't have much experience with this either, but do keep a sharp eye on anything like this. My best wishes to you both.

Cathy

By roadrunner
Posted October 25, 2009 at 1:21 am
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Since it isn't showing signs of leaving I would insist on a visit,it can't hurt,and insist on tests,you've come to far to let it slide now....glad things are going okay otherwise.....ginger

By Cheyenne
Posted October 25, 2009 at 1:28 am
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I'm glad you posted this this. You are rightfully concerned. Something is not right and it needs to get checked out. There could be an infection somewhere, maybe low grade right now but too risky. Of course he may not have gotten all his strength back and may not have his immune system up to par, but this has been going on too long. I agree with Nancy.

By lsh
Posted October 25, 2009 at 7:51 am
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I don't have a neo, but from what I understand there aren't usual symptoms of UTI when one has an UTI. I would go give a urine sample to be cultured and ask for a visit with the doc. It is important to have the culture so they will know if there is an infection and what antibiotic has activity against whatever "critters" are causing the infection if there is one. Also a blood draw could give the doc some needed answers. Keep us posted on how it goes.

Lynda

By balihigh
Posted October 25, 2009 at 8:08 am
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Gosh, where are all the neo people? I have a bag but can tell you that we get UTIs on occasion. I had an especially bad one a couple of months ago with symptoms just like your husbands. I had to go once a day for a week for intravenous antibiotics. Now I am fine but from what I understand, any of us who have diversions will always be susceptible to UTIs. Please go get checked because this can be serious.
Hugs
Nancy

By DebbieMP
Posted October 25, 2009 at 9:41 am
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Wow...woke up this morning after a night of checking for fever and found great advice from all of you! Thank you so much. Read them all to my husband who agrees now this must be checked out. His RC and neo was done at UW Madison (we're in Illinois so its about 1.5 hours north) by a surgeon highly noted and experienced with neo and urology oncology--excellent. Unfortunately, where we live the hospitals are not familiar with neo's so a prior visit to the ER here soon after surgery for another infection were extremely long, as they had to communicate with UW Madison to understand how to treat him.

It was suggested last week when we called the nurse practitioner that if fever persists to go to our regular MD for standard testing versus the long ER wait here or drive to Madison. We will do that tomorrow and get results to his surgeon. Unfortunately, we understand that doctors' offices are double and triple-booked now due to flu but he agreed he'll bring a good book and wait as long as necessary to get tested.

Thank you all once again. We will keep you posted and of course, continue to check on how you're doing. If you think we are not moving quickly enough on this, please feel free to speak up. Its all so new to us.

Debbie

By Karego
Posted October 25, 2009 at 9:46 am
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Neo diversions always need follow up to make sure there is no UTI. Fever, chills, cloudy urine, stronger smell are symptoms for us with diversions. We will not have pain or urgency feelings. (that has been taken out of the equation by the surgery) And we must always be on the alert for UTI's
We will always have bacteria in our new bladders, so, that in itself is not a sign of infection. But, combined with all the other symptoms I just gave, a culture needs to be done.
Your general practitioner and your urologist needs to have a talk so they are both on the same page for your continued care.
We are different after RC and our GP's need to become knowledgeable on how to treat us.
Karego

By neoman
Posted October 25, 2009 at 9:59 am
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debbiemp

I have a neo bladder, (chemo 1st then surgery) sometimes feel that I have the body aches that may lead to the flu, but it never got there. Did not get high temps however.
If I work hard during the day time feel really worn out and I go straight to bed feeling venerable to getting sick.
I also got the flu shot and never got sick knock on wood. I feel that most of my body issues are due to the chemo. I have several lingering loss of sensation due to that.
I would also get a urine culture just to make sure nothing was brewing that should not be. He went through a big surgery. My uro said I would take a YEAR to heal. And I am taking that whole year I feel. He will have a variety of issues, so be ready.
Neo

By jj803
Posted October 25, 2009 at 10:08 am
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I would also be concerned about continued fever. It is true that our diversions will have increased white cells without infection so the quick tests for UTIs may be falsely positive. Agree with need for clean catch urine culture with sensitivity, if bacterial infection suspected. You might want to make sure that the laboratory requisition notes that he is post cystectomy and neobladder. It probably won't mean much to the lab, but more information never hurts. I hope you soon get to the bottom of this and sounds like you are on the right track. Best wishes,

JJ

By birdman
Posted October 25, 2009 at 12:06 pm
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I had low grade fevers 3 or 4 times around 99.5 and also thought it was Uti's,I also have intestinal blockages and I think constipation can cause fevers also so I think it was one or both. I drink Cranberry juice everyday now and havent had uti since May 30th with blockage and I did run a low fever at that time and Neo was not emptying also.

By SailorMan
Posted October 25, 2009 at 8:00 pm
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Post getting the neo, I underwent a number of infections starting at about 8 weeks. My uro who was also my surgeon was prett ygood about giving me antibiotics to have "just i case" and all it took was a call to him to discuss symptoms and I already had the meds available. The first infection did result in me being hospitalized but that was more a case of the doctor covering for my regular surgeon then about my actual condition.

By jatclt
Posted October 25, 2009 at 8:03 pm
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My husband had a RC on May 19th and July 20th we were in the ER because for several days he had a fever that ran from 99 to 103 degrees. At first doctors thought he had the flu-it was a UTI. They put him on antibiotics multiple times a day then once a day for about two months. When we went back for a check up the doctor took him off the antibiotics because they were possibly causing some pulminary fibrosis. Hope you are able to get things cleared up quickly!

By DebbieMP
Posted October 25, 2009 at 9:49 pm
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Thank you all for the feedback, helpful information and experiences. Being new to this, as you also most certainly are, we are trying to get our "footing". We will get this checked out first thing tomorrow morning and keep you advised. Whatever it turns out to be will hopefully help someone else who may be inclined to either dismiss similar symptoms as flu or get it checked out to treat or eliminate the possibility of infection. Would rather we all err on the side of caution.

Still today, his temp went from normal and in the course of a few hours, back up to 100.1. Almost certain this is infection.

Debbie

By browns-crossing
Posted October 25, 2009 at 10:48 pm
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Please call dr. you need a urine for culture to see if any bacteria grows out & urine to see if there are any nitrates in it (nitrates show infection). I made that same mistake and ended up in the hospital on IV antibiotics. So please call your Doc. You should be quite careful with a neo bladder, as it is difficult to tell if you have a UTI, we do not feel the same systomes, till you are really sick, high temp, shaking chills. Best be on the safe side and ask for a urine culture.
Best
Browns Crossing

By wt
Posted October 26, 2009 at 8:51 am
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Hi Debbie
I suggest you take your husband to the neo surgeon to check on infection. I had a similar situation about 6 weeks after the neo surgery and it was an infection building up in the kidney because some scar tissue in the ureter was not allowing all the urine to flow in the neo bladder. There can be many scenarios involving infection or scar tissue. It will be months 6 or more before your husbands immune system is back to where it was . At this point he is suseptable to getting infection much easier. My symptoms fever than it would go away ,tiredness some days excessive, lathargic, and some days loss of appetite. I wish you all the best in your husbands diagnosis

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