Chronic UTI

I’m reading all your posts and am grateful that I found this way to connect with people who have chronic UTI’s. I had my bladder removed because of cancer and replaced with an Indiana Pouch 4 years ago. I had UTI’s every month for the first year. Then was given low dose antibiotics for 3 years. They no longer seem to be working. I need to find a doctor who can follow me and advise me what to do. I would appreciate any comments. Thank you, Kathy

I am sorry to hear you are struggling with this. It can really pull your immune system down. I've experienced all of that and finally began researching ways to get myself as strong as I could. I take some supplements to increase my immune response. I also researched the results of my bacteria type in my UTIs ,
1. To see if it's always the same
2. To identify what types of antibiotics are the best and ensure if I see a different doc at an E.R. that's what I'm prescribed
3. I test at home to ensure I go in as early as possible with any symptoms
4. I researched what probiotic helps irradicated or at least inhibits the growth
5. Researched and purchased a reliable high quality one
6. I limit sugars... I seem to crave them right before symptoms start as an infection is building up. I dont get regular symptoms anymore... mostly fatigue... not hungry except for sugar. So I Get my carbs in a healthier way.
7. Sleep... get good sleep 9 hrs daily if poss . I have to work on it.
Now,
I felt comfortable researching all this , made me feel proactive and gave me a little control I felt I had lost in my health recovery.
It's hard when your body fights against you!
But I certainly understand if you don't, it can seem daunting. Then these 5 orv6 things that impacted me, might be questions you could ask your medical team about. Maybe that can help improve things for you . I'm moving into my 15th week without one after 5 years of every 3 to 4 weeks of serious infections with two bouts of sepsis.
Hoping you are doing well. Sending hugs!

Than you for your reply. You give me hope. I’m going to have this Indiana Pouch removed and get an IC which is a bag attached to my belly. I’m hoping that may make a difference. I’m so glad your infections have stopped. I just wish I could find out the cause. It’s so depressing to have one after the other for years. I’m willing to try anything but I’m hoping there’s a doctor out there who would guide me. Thank you again!

My daughter's doctor had to put her on a low dose antibiotic to keep them from recurring until she had kids and they got better

I had 4 UTI's in 4 months earlier this year and asked to be put on a low dose of Keflex 250mg daily by a urologist and all UTI's have stopped. It was just too stressful going to the ER every month and being hospitalized, and had blood in the urine. Ask your nephrologist but my nurse coordinator told me many transplant patients get UTI's and have to take a low dose antibiotic daily. Take care, BB

Do you stay away from dairy while taking Methenamine? I’m on 1gm per day but I also like Greek yogurt and kefir and I’m not sure if I should have this while on this med.

That's interesting. I was never told to avoid dairy because of the methenamine but try to avoid anyway because of my kidneys.

I have had 6 UTIs in 7 months.I was referred to a urogynocologist.She found I have vaginal atrophy(I am post menopausal) and prescribed vaginal Estradiol.
I was pleased there was a solution to the UTIs.The first night I used it,I went into an 8 hour Afib episode.I do have AFib.The doctor said that is not possible.If it wasn't AFib,it was some other rhythm disturbance.I know what I felt
The doctor told me not to use it again and now wants me to start long-term trimethoprim 100mg.I also have CKD and am reluctant to take antibiotics unless necessary.
Anyone have a similar problem or advice to share?

I have stage 4 CKD. My eGFR ranges from 25-30. Recently, I had symptoms of a UTI. It started on Saturday and went into Sunday so I had to go to the emergency room. They did urine and blood tests and verified my kidney condition. The ER doctor prescribed Cephalexin 500 mg/3 times/day. That dosage is too high for my kidney condition. I went home and researched an NIH study that clearly said this antibiotic must be administered in smaller doses for CKD. I messaged my PCP who very quickly messaged back and said to reduce the dosage to 2/day and I have an appointment with her in 2 days. She may stop the meds altogether. Bacterial infections are difficult to treat properly. Often, you don't need the highest dose over the longest time to treat the infection.
IMO, you have to be your own advocate for healthcare. In another thread on the Mayo site, I told of my experience with a local nephrologist who diagnosed me with ADPKD (a pretty awful disease). I thought I had that disease for 7 years, waiting for my kidneys to be filled with cysts and growing to possibly 20 lbs. Many are on dialysis by the time they're 60-70 yrs. old. Turns out I did not have that disease. I made an appointment at Mayo in Rochester and the ADPKD specialist saw me for about 15 minutes and said you do not have this disease and did a genetic test to prove it. She was right. I have a different condition which changes the whole story.

My urologist never mentioned anything about dairy either. I googled the med and read about it.