For Chronic UTIs

[GoodHealthIsAJourney]

This may not be news to most people here, but I wish I would have known this before.

My husband has been getting UTIs for 3 years - as many as 12 per year. In the last year, it's been one constant infection. His bacteria became resistant to all oral meds, so we were going to the hospital for daily antibiotic infusions. He was under the care of a urologist who just said, "sometimes this happens." Seriously? We live in an area with only one urologist.

Gratefully, someone suggested we see an Infectious Disease doctor. I did a little research, and found that Northwestern Memorial Hospital in Chicago has a Complex Urology Clinic. It was a bit of a drive for us, but worth every second. Every case is reviewed by a multi-disciplinary team that includes Infectious Disease, Urology, Pharmacy and Internal Medicine. They worked with us for follow up appointments so we could do video visits when possible, and our doctor even gave us her personal cell phone number in case we had any questions or issues. The care was world class.

They mapped out a four-part plan to determine the cause of the infections, and so far, he's been infection free for over a month! That may not sound like much, but it's been over a year since he's not had an infection! We are over-the-moon grateful.

Infection Control approaches things differently, and I so wish we would have known about this option before. UTIs are miserable, and they can damage already injured kidneys. I wouldn't wish them on anyone!

[snoochy]

I certainly do relate to constant infections. I had my end stage bladder removed in 2022. Without a bladder, I have the ureters connected to a stoma which sends urine to an outside urostomy. I have stoma made from bowel tissue on Since then, beginning

[snoochy in reply to snoochy]

Since my surgery, which gave me my life back from interstitial cystitis, I have developed colonized bacteria (klepsiela, pseudomonas, eColi) in the kidney. I also see an Infectious Disease Dr. who has a standing order at the lab for me to have urine checked and cultivated when I become ill. Because I have no bladder and urine backs up in the kidney and a benign growth that encompasses both kidneys and ureters, my kidney and ureters are under pressure. The pressure closes off both ureters and both kidneys are misshapened from the pressure. Surgery is out of the question as I’d have to have both kidneys removed which, at 77, i would not survive So, for 2years, I have had stents in each ureter which are exchanged every three months by an interventional radiologist in the hospital. My CKD was an eFGR of 61 in 2022 and now is 21. It can be very discouraging as my diet ridged from potassium, phosphorus and protein, I’ve developed osteoporosis and treatments for that are hard on the kidneys. That’s my story.

I read the group posts here daily and have learned so much and gain strength to know the things I can do are worth the effort, even if the results are small. A little sense of control helps so much. I have a lovely family, great friends and a wonderful community of faith. I’m truly blessed.

Now, I responded to the post on an infectious disease Dr. Before every stent exchange, she orders cultures and antibiotics to take for a few days before and after the surgery. I also have IV antibiotics during the surgery. She is such an important part of my care. Anyone who has UTIs and CKD, I highly recommend a referral to an Infectious Disease Dr., too.

[GoodHealthIsAJourney in reply to snoochy]

Thanks so much for sharing your story - you are a true kidney warrior! I can't imagine all you go through!

[4to3]

Not for your situation, but a simple home remedy against male UTI. Wash tip of penis everyday, keep underwear clean and dry, and try AZO which is an online supplement.

Dave