Any advice on recurring UTIs?

[LesE62]

Hi folks,

I'm not sure if this is the correct forum for this.

I have several health issues but my question is regarding problems with recurring UTIs. Due to nerve damage/urinary retention, I have been doing intermittent self catheterisation for years (although perhaps not as diligently as I should have been) However, things have been getting worse for a while now and I have better at keeping on top of things.

However, in July/Aug I had a really bad abscess/cellulitis at top of thigh and since then, I have had almost constant uti's. Sometimes the antibiotics help, sometimes not so much but overall the symptoms improve while on them but very shortly after completing the course, it starts up again.

I have had so many courses of them the past 5-6 months, I genuinely can't recount how many. Obviously with covid, it's only been calls to GP and everytime I call it's a different doctor. I have only ever had 1 sample sent away for testing and other than that it's trial and error.

More recently, I have not managed to do self catheterisation much because I also suffer from neck and back issues and for the last 6-8 weeks, I have been struggling to cope with the pain and immobility. It's an embarrassing situation but it's also been so uncomfortable (when I manage to try) to insert catheter.

Over many years, I never had infections but as I said the pain, discomfort, recurring infections and difficulty doing the ISC is such a change. I have offered to put samples into surgery to get tested but they don't want to do that. Surely I can't just keep taking more and more antibiots? Also atm I can hardly stand to use a cath.

Does anyone suffer with this kind of issue or advise of what I can do?

Thanks in advance

[Tracys5678]

Oh my goodness, I am in almost the exact same situation. Since August also. A fantastic young Dr. from a clinic has been advising .e over the phone and keeping tabs on me. He has said it is important to monitor for fever and nausea and be very careful it does not spread to kidneys . It could then spread to blood. He said a urologist should be consulted. I finally can see one soon You should not wait either. Using a catheter creates many issues eg: tissue damage , irritation etc and the whole reason for it in the first place could be worse. If it hasn't been evaluated in a while, you won't know.

Please take care if yourself

[rabbits65 in reply to Tracys5678]

Tracy , hello this is Penny, I’ve had at least five loads of antibiotics in the last three months. Infection keeps coming back. I’ve asked if I can go go urology . I frequently put in urine samples into the doctors surgery . It seems like it’s never ending and never getting any better . I am 68 years . Hope you get better soon

[timbowPSP in reply to Tracys5678]

This may be a bit late for you Tracy/Rabbits/others - but better late than never?......... Have you tried '(Waterfall) Mannose D'? Mannose is a monosaccharide, not an antibiotic. V. good against UTI's, quite safe and no negative effects of an anti-b, but may take a bit longer to work. If any problems finding by Google, welcome to email me at [e-mail]. (I am not a physician). TimbowPSP

[Shebacat1]

Hi I know what it’s like. I have to self catheterise- have done for years following back surgery which was successful but left me with urine retention issues. I make sure I do catheterise every night to make sure at least once a day my bladder is completely empty. Two years ago I started having frequent uti and as fast as I finished a course of antibiotics back it came. My surgery was good and when I requested that they sent off at least 2 or 3 specimens it was to check that the infection hadn’t become resistant to the antibiotic being prescribed. Presumably if you are self catheterising you’ll have been under a urologist / specialist nurse? Once I’d had the infections confirmed and the correct antibiotics given (it still wouldn’t go away) GP referred me back to the hospital and I started weekly antibiotic infusions directly into the bladder. Took about a year to finish the treatment but it really helped. I know it’s hard with Covid but think you need to go back to GP. Good luck

[LesE62 in reply to Shebacat1]

Hi and thank you so much for your reply.

That sounds like myself.....I've had numerous courses of trimethoprim, clarithromycin, cephalaxin? and others tje past few months but just doesn't seem to clear for long.

I was under uro many years ago after the last full retention but haven't seen our spoken to them for years. This past 5-6 months have been so different, just wish they could get it sorted out.

Thanks for your reply and take care x

[katieoxo60]

Hello there it must be so uncomfortable. With a catheter do you not have a routine check for infections. ? I have had a check due to blood in the urine during the lockdown, as the doctor did not want to give repeated antibiotics as it can cause thrush. But I still had antibiotics only a week later and everything is cleared up now. My problem as been going on for years . I was given a drug that is used for male incontenance for another problem but it reduced my bladder symptoms. Seriously you need to see a specialist coronavirus or not. Other patients are being seen by consultants but waiting lists are long unless its urgent. Try your surgery once again or do you have a walk in unit if not A&E .?Take care and hope you get the help you need soon

[jonnylongton]

I think mine is a little different to yours Les. I am a male and am half way through a UTI , and it always affects my kidneys, it knocks me off my feet as allegedly its much worse for a man ( only 3% of men get UTIs).

Well ive had these quite regularly over the past 2/3 years. I have a lot of underlying illness's one inc P.A. , diabetes, degenerative disc disease, cirrhosis of liver (non alcoholic) spleen problems, to name a couple.

I find it very hard to cope mentally as well as physically, i cannot even think how bad it makes you. But does it affect you or anyone else more with having PA and other problems, including anxiety and depression, as both are through the roof lately and im finding it hard to find someone to talk to, and it is getting harder to cope.

Thanks

Take care and stay safe.

[LesE62]

Thanks for all your replies.

I phoned my GP surgery again today and spoke to another doctor. I explained the situation and said I felt I had yet another UTI. She said she wasn't to sure what to advise and I told her I felt this had kicked off after my leg abscess.

She kind of agreed it looked like that - pointed out that it was sepsis then in my leg? and that strange things can happen after having so many strong antibiotics to sort that out. Also that my "body microbiome" may be out of kilter and has suggested that I buy probiotics to see if this helps to reset things. However, the other thing decided on was.....yet another course of Cephalexin! Because it calmed thing for about 3-4 weeks instead of 2-3 days respite.

I have taken yogurt drinks for years now but have ventured out today to buy probiotics....was advised in H&B well so will give these a go and see if they help. Will be starting antibiots again later tonight and see how it goes.

Hopefully better this time but if not, I may have to make my views and wishes stronger.

Thanks again for all your input folks.

Take care x

[Twinkle3131]

Hi saw your question yesterday .The Best cure ever. D-Mannose. It is a special form of sugar that binds to the walls of your bladders and urethra and makes it too hard for the bacteria to stick to the walls. It is a really safe product so look it up. Best purchased in tablets of 500mgs. If you are in NZ then you can buy this in some chemists as Uro fem. It is a bit expensive though not compared with all the doctor visits. It can also be purchased overseas. Mine is paid by ACC as the chronic cause is injury.

I take this daily with one tab in the morning and one at night. You can get powder which will do for a quick dose. If your infection is acute and proven by lab test you MUST take he antibiotics. You can take the D-mannose at the same time. and keep taking it for at least a month. As my cause is spinal nerve damage I need it constantly and in big doses.. The other thing I take is a low dose antibiotic which is better than getting the pain of infection. If the symptoms start up I double the D-Mannose for at least a day if not more and then do not need the antibiotics. Mind you fluid intake is critical. During summer I wear dresses and skirts as much as I can, cotton only knickers as friction does not help. So drink heaps and try the D Mannose. Good luck

[LesE62 in reply to Twinkle3131]

Hi and thanks for that.I haven't heard of this before so will defo look into it.

When I'm on the antibiotics, things mostly improve but in anything from a few days to a few weeks, the symptoms start up again. Gp kept giving a couple of courses of same one but over the last months, several different ones have now been tried. The latest cephalaxin been given twice and just finished it today again so will see how things go.

Thanks again and will def do some research into D mannose. Take care

[Teraangel]

I was having blood in my urine and it was assumed to be UTIs. I just went along with it until I had a chest xtay and a very large "stag horn" kidney stone was discovered, so big that they had to remove the entire kidney. Things cleared up for a couple years and then they began recurring. I found out that because I had arthritis and spine pain, I had been avoiding trips to the bathroom, which were a pretty good walk, or upstairs. After an elevator was installed, I went from 7 UTIs in one year, to almost none.

Try very hard to keep up with the catheterization - my doctor told me that not voiding breeds bacteria.

Ask your doctor for suggestions if you're having trouble. Best of luck to you.

[Hedgiemum]

Hi Lesley,You shouldn't be suffering like this. Do you have a family member that could call your surgery to say that they are not happy with your treatment.

It sounds like you could do with a district nurse visiting you regularly to help with the catheter. Also ask your gp for a referral to Urology at your nearest hospital.

I hope you feel better soon and get things sorted.

Tracey