Bladder chronic UTI and urgency

Posted by daphne52 @daphne52, Apr 3, 2023

I suffer from chronic UTI with constant urgency with or without an UTI. I try to deal with the UTIs, but the pain I have when I have any amount of urine in my bladder is taken up my whole life and wellbeing. My URO doc throws nothing but Meds at me and sends me out the door that do not work. Please Please, anyone give me some direction or advice because I am thinking thoughts of not being here anymore. I AM DESPERATE. I do not have IC. Thanks, Kathy

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@daphne52

Have you ever taken cranberry/d'mannose capsules for prevention of the UTIS?

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@daphne52 I’ve never heard of cranberry/d’mannose capsules. When I was working my way through college as a certified nurses aid (CNA) we passed out cranberry juice daily to the patients, especially for those who were catheterized. It was thought to help prevent UTI. My father-in-law who had end stage renal disease (ESRD) swore by it. I think it might fall into the category of “might help, can’t hurt”. When I suspect a UTI coming on I fill a huge glass with ice, pour cranberry juice over it and sip throughout the day. I don’t know if it is the cranberry juice itself or increased fluids in general that is helpful but it gives me a sense of flushing out bad stuff and promoting good urinary tract health.

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@daphne52

Have you ever taken cranberry/d'mannose capsules for prevention of the UTIS?

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Did your Transplant Center OK you taking Cranberry/D-Mannose? I used to take it before the transplant but they said no supplements at all after transplant. it worked for me before. And I am just recovering my first post transplant UTI after 3 days in the hospital on IV antibiotics. Taking oral antibiotics now at home. The UTI process and urine cultures was a traumatic process for me, as first 2 cultures were negative. I had to wait until a fever and chills to get accepted at a ER for treatment. Please let me know about the Cranberry/D-Mannose acceptance at the TC. Thank you, BB

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@cehunt57

@daphne52 (Kathy ?) I’m jumping in here regarding UTI (urinary tract infections) and kidney / bladder stones. I’ve experienced this and it is miserable. In your situation it sounds like it is excessive and persistent. @sally0526 and @cyndip1122 have made some good suggestions regarding second /third opinions and possible treatments. What concerns me most is your statement about feeling DESPERATE and “having thoughts about not being here”. Serious physical problems involving pain such as yours have a way of wearing you down emotionally and mentally. It is time (yesterday) to find the professional providers you need (physically, mentally, emotionally, spiritually). Often a friend or family member (your husband?) can be helpful in advocating for you. As others have said, “You are not alone”. My hope and prayer for you is that you find the help you need and can start looking forward to better tomorrows.
Cheryl

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Thank you for your reply. You are right. I don't think I have in my 70 years ever been this worn down and at this time I did mention giving up. I have never ever had a thought of not being here and probably should not have said that, but this has taken over my life. My husband is my rock and is my advocate. Having gone on this site is something I need to bring me to the reality that there are so many of us out there suffering. Thank you for the comforting words and words of wisdom, I needed that.

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@cehunt57

@daphne52 I’ve never heard of cranberry/d’mannose capsules. When I was working my way through college as a certified nurses aid (CNA) we passed out cranberry juice daily to the patients, especially for those who were catheterized. It was thought to help prevent UTI. My father-in-law who had end stage renal disease (ESRD) swore by it. I think it might fall into the category of “might help, can’t hurt”. When I suspect a UTI coming on I fill a huge glass with ice, pour cranberry juice over it and sip throughout the day. I don’t know if it is the cranberry juice itself or increased fluids in general that is helpful but it gives me a sense of flushing out bad stuff and promoting good urinary tract health.

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I am now trying the dmannose/cranberry capsules and it seems to cause gastro problems, (extreme gas). I'm going to try it another week and hoping the gas will ease. You mentioned catherization. I saw my Uro/gyn doctor yesterday about urine urgency and not completely emptying my bladder, which keeps me in constant pain. I am so hesitate to do it for 2 reasons, doing it wrong and harming myself and most important causing a UTI. I have chronic UTIs and losing the battle, now she wants to put me on a daily long term preventive antibiotic. Any advice. I just need any experiences you may have heard about benefits/warnings that may have come your way. I understand the hesitantly one may have on this forum giving out opinions, but I am beginning to trust the more life experiences on here than having my doctor playing guess and check, not knowing the how's and why's. I trust this sight because of the compassion shown on here. Thanks for listening. Kathy

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@sally0526

You’re welcome. I’ve been in your position and the I know the desperation is overwhelming. My second opinion doctor took control and helped me tremendously. My third opinion doctor told me he agreed with everything my second opinion doctor was doing and his confidence made me feel like I definitely did the right thing by getting the second opinion. I’m glad you have the support of your husband. I have a great husband too and he has been there for me through all of this. Don’t be surprised if your current doctor is unhelpful with getting you a second opinion though. I’d go online and find a urologist not affiliated in any way with your current doctor and make an appointment on my own. Again, I want only the BEST care for you and you need answers and relief from the unrelenting pain. Stay strong and proactive and you will get through this.

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Updating, I saw my new doctor yesterday and concerning my chronic urgency and UTIS. Now self catherization is what she wants me to do. She had me void and catherized me and my bladder was not empty. The overwhelming stress I am going through with these UTIs and now wanting me to catherize myself, a whole new stressor is added. I'm hoping to hear any experiences on here about self catherizing. When I expressed my concern whether it can cause UTI, she said my concern here today is emptying my bladder which not doing the self procedure, it can cause utis. I'm 70 years old and grasping all this info can be confusing and add to my overwhelming frustration. So glad I have a place to vent. Anyway looking for any personal experiences to help me understand the how's and why's of catherization. Appreciate all and any thoughts. Thought I would just give you an update of my journey. Thanks again for lending an ear. Kathy

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@daphne52

Updating, I saw my new doctor yesterday and concerning my chronic urgency and UTIS. Now self catherization is what she wants me to do. She had me void and catherized me and my bladder was not empty. The overwhelming stress I am going through with these UTIs and now wanting me to catherize myself, a whole new stressor is added. I'm hoping to hear any experiences on here about self catherizing. When I expressed my concern whether it can cause UTI, she said my concern here today is emptying my bladder which not doing the self procedure, it can cause utis. I'm 70 years old and grasping all this info can be confusing and add to my overwhelming frustration. So glad I have a place to vent. Anyway looking for any personal experiences to help me understand the how's and why's of catherization. Appreciate all and any thoughts. Thought I would just give you an update of my journey. Thanks again for lending an ear. Kathy

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This sounds so strange to me Daphne. Did the new doctor give you a diagnosis as to WHY your bladder isn’t emptying completely? There could be many reasons. As to self catheterization…go to the main Mayo Clinic page and put “self catheterization” in the search box. Many posts about it came up when I did that. You might want to join a second chat group about self catheterization and chat with others in that group about their diagnosis and why they are now self catheterizing. Did you make an appointment with a nephrologist yet?

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@sally0526

This sounds so strange to me Daphne. Did the new doctor give you a diagnosis as to WHY your bladder isn’t emptying completely? There could be many reasons. As to self catheterization…go to the main Mayo Clinic page and put “self catheterization” in the search box. Many posts about it came up when I did that. You might want to join a second chat group about self catheterization and chat with others in that group about their diagnosis and why they are now self catheterizing. Did you make an appointment with a nephrologist yet?

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Great question. I had no idea she was heading in the direction of self catherization. I Absolutely did ask her why this is happening to me and she said "I do not know", but you need the pain to go away. How does she know it will take the pain away, she doesn't. It's like I'm an old car and checking out the possible parts that may be bad, work on them until she finds the part that needs repaired. I am dumbfounded.

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@daphne52

Great question. I had no idea she was heading in the direction of self catherization. I Absolutely did ask her why this is happening to me and she said "I do not know", but you need the pain to go away. How does she know it will take the pain away, she doesn't. It's like I'm an old car and checking out the possible parts that may be bad, work on them until she finds the part that needs repaired. I am dumbfounded.

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What the heck is going on with these doctors? Doctors take an oath to HEAL. At the very least I would think they’d order a CT Urogram to see what’s going on and look at the structure of your urinary tract. I’m going to suggest (again) that you make an appointment with a nephrologist. (Kidney doctor). Ask for an extra 15 minutes for the appointment and start at the beginning and explain what has been going on. Write questions down beforehand and take them with you so you don’t forget key questions. If you don’t mind me asking…where do you live?

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I ordered some Cranberry/D-Mannose and wondered if others' TC have approved these for UTI's? I have taken them pre-transplant and they seemed to prevent UTI"S for years. Anyone taking this supplement now for post transplant UTI"S and does it help? I did ask my TC and they approved this supplement for me as I just had a UTI last week at 6 weeks post transplant and had to be hospitalized for 3 days. My Urine cultures prior to the hospitalization had been borderline or negative but the UTI was there and getting worse. It took a fever and chills to get me admitted to the hospital. I felt pressure on my bladder prior to the fever and I did not feel bladder pain. It seemed to be different symptoms now post transplant. Thank you, BB

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