Indiana Pouch and Chronic Infection

[colleen]

I’m wondering if there are others out there who have an Indiana Pouch and who have experienced problems with chronic UTI. I have had an e.coli infection ever since my surgery 12 months ago. Most of the time, it doesn’t really affect me and I’m asymptomatic, but twice it evolved to the point where I was feverish with pain in the right flank area indicative of a kidney infection. I’ve taken numerous rounds of antibiotics of varying kinds – all of which are supposed to work on the bug I carry – but to no avail. Does this sound familiar? If so, I’d appreciate hearing about your experience and especially about what your doctor(s) have advised doing about it. Thanks!

[Zina]

Hi Colleen,
I have experienced infections with my Indiana pouch twice so far in the year and a half that I have had it. Even without an infection, I experience urine reflux into my left kidney occasionally, which causes short bursts of discomfort. I know I have an infection when my output begins to have a strong odour. The first time this happened I didn’t realize it was an infection, so it went on for a long while. So long that I did experience flank pain that didn’t go away. I was treated with Cipro and the pain and odour dissappeared. The second time, I caught the infection myself before the flank pain started. I treated it with Cipro and it cleared up.
I don’t think I have reached the point of becoming feverish, as you describe. That is a definite sign of infection. I am sure you already know this, but whenever we give a urine sample from our pouch, it will always have a high level of bacteria in it. If you are relying only on lab results, they will always indicate an infection. You are wise to use your other symptoms as a guide.

I have a question for you….does your stoma bleed superficially? I know it is made of vascular tissue, and as such has a lot of blood flow to the stoma, but mine will start to bleed if I wipe it too hard with a towel after my shower. Do you find the same thing?

[colleen]

Thanks, Ladies. Zina, It’s reassuring to hear that others find that they always culture bacterial “infection” with an Indiana Pouch. That was a bit freaky for me because I had terrible problems with infection before my bladder was removed and in the hospital. I developed antibiotic-resistant infection and still, my cultures come back with bacteria that are resistant to a lot of antibiotics, including Cipro. Anyway, your response strengthens my feeling that I should not take any more antibiotics unless symptoms such as odor or fever warrant it; i.e. unless I become more systemically ill.

As for your question about whether my stoma bleeds – yes, it does. I often have small amounts of blood on the stoma cap/bandage and I can easily make it bleed (slightly) if I rub it too hard. I, too, wondered if this is normal at this stage (for me, one year post op) and it appears it is.

All in all, doing very well and looking forward to a very happy Christmas with both my daughters and son-in-law. Last year at this time, I was in hospital recovering from surgery! This is so much better and I am so thankful.

My very best wishes to everyone for a Merry Christmas and a Happy New Year!

[Author]

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