Chronic Infections with RC – ileal conduit

[Bruce]

I have been suffering with chronic infections for a long time now. I have been on antibiotics since July ’12 with a few days off in between each different antibiotic they keep throwing at me. The infections aren’t small ones they are quite serious and I am actually flagged in the health system now. ESBL (E-coli strand), Klebsiella and Pseudomonas are the main 3 that keep cycling. Currently I have 2 infections and now my guts are unable to digest and I am always in the bathroom with my bowels in spasms and upset tummy. I have no idea what else to do. I have changed my diet to no/low sugar, gluten free, no red meat, increase water intake. I am in a lot of pain and very nauseated as well. I do urine samples every 2 weeks and they are always coming back with another repeating infection…usually ESBL and something else or just ESBL. My mood had gotten down a lot and my energy level is extremely low from not being able to eat a lot, the overactive bowels and all the infections. Any suggestions? I am fading fast here and even the doctors don’t have any suggestions on what to do. Feeling very isolated in this. Thanks.

[marysue]

Have you thought about or has anyone suggested the use of probiotics? Our guts can get out of whack with heavy antibiotic use. My digestive track goes awol when doing BCG and I develop yeast infections. I find that probiotics help as does the consumption of yogurt with probiotic cultures in it. If you need help with this I suggest consulting a naturapathic doctor for guidance and make sure that they are aware of your bladder cancer history. If you are on any meds you will have to be very careful when trying out more natural type stuff to avoid any interactions. I suggest this as an addition to what you are doing to combat bladder cancer not as a replacement.

[Greg]

Bruce, sorry to hear of your infections and the resulting malaise you are feeling. Not sure whther you are at a major cancer centre with a top doc, but if not, that would be my first choice. Best to see someone who has seen it all before and knows what has helped others.

[stumblegirl14]

Bruce I’m really sorry to hear you’ve been having such a tough time. I like Gregg’s advice & think you should probably get in touch with Jack to see if he can help you get in to a major cancer centre & docs that are knowledgeable about these infections. This is not a fun time you’re having for sure. Fingers crossed that you get the help you need.
Flo

[KIOWA]

I was once where you are Bruce, not for the same reason though but the feeling was the same. The antibiotics really created problems for my digestive system. Finally a good specialist got aggressive and got biopsies and got the right med and it got resolved. The previous docs just kept trying different things. Try to get a disease specialist. At the time I went through that I thought I was going to die and hoped that I would. I will keep you in my prayers,

Kiowa

[colleen]

Hi, I recognize so many similarities between your history and my own. I was particularly interested to hear you have been struggling with ESBL infection. I had/have that one also. Before I had my bladder removed, it created alot of illness in me. I was fortunate to be referred to an infectious disease specialist who treated it very aggressively – a month of intravenous antibiotic (ertapenem) to treat this “super bug.” At the time it appeared that it had done the trick, and indeed it has not shown up in the urinary tract; however, when I was in hospital recovering from the cystectomy, there was a culture from a source other than the urinary tract that did reveal that I still carry the ESBL bacteria. In the gut, it doesn’t usually cause a problem. You probably know this, but ESBL is a “superbug” probably caused by the overuse of antibiotics. I think I got mine by the overuse of CIPRO, to be precise. It is resistant to most commonly prescribed antibiotics. If you haven’t consulted an infectious disease specialist yet, I highly recommend you get a referral.

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