Hello Community: I notice from past posts that many sufferers have constant UTIs. (urinary tract infections)
I'm trying to prepare/prevent for hubby as we slip between stages.. What causes all these UTIs?? Thanks!
Anne G.
Why So Many UTIs?: Hello Community: I notice... - PSP Association
Why So Many UTIs?
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raincitygirl
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My husband holds his urine for sometime 12 + hours.never really empty his bladder.I have been recordings his urine and Bowles movements.it's a crazy ride.
Dee
raincitygirl in reply to
Ive noted the rollercoaster you've been on lately, Dee. Hydration's not enough in his case? Poor dear...
Anne G
My husband had 1 diagnosed UTI at the beginning of his 6 year battle. As the antibiotics he was put on led to a year of steroids with ulcerative colitis I asked what could be done to prevent further outbreaks as the GP said he should never have antibiotics again. I was told keeping him hydrated with plenty of fluids would help. It did, through a PEG once he couldn’t swallow fluids. It was very time consuming with thickened milk shakes, packet cappuccino’s and any other fluid he could take safely. But for him it worked with no more UTI’s.
Best wishes
XxxX
Catch 22, I am afraid. Need more fluids to help prevent ITU's, but because of PSP, unable to swallow fluids! Try lots of jelly, thickened milk shakes, soups, anything that has high water content, it keep fluid intake as high as possible.
Lots of love
Anne
I'm getting the message! Thanks 
"Other Anne"
Hey, don't beat yourself up. None of the rest of us could/can keep the fluid intake up either. Shame the medical profession don't realise this and prescribe intravenous fluids, every so often. Certainly, every time Steve had a UTI and was admitted to hospital, he recovered quickly after a quick bag of fluids.
Sending big hug and much love
Lots of love
Anne
Hydrating is very important for both urinary track and bowels. We got a drink to make from the speech therapist.
1 cup coffee
1 cup milk
2 tablespoons instant pudding (US) Angel Delight (BR). I use chocolate, vanilla and butterscotch puddings.
Ice cubes (I use 7)
Put all in a blender and blend for a minute.
More sugar if not sweet enough.
I have a tumbler that holds a quart. It is served with a large smoothie straw.
Agreeing with all of the experienced posts above.
Hydration, Hydration and then hydration.
this also helps with defecating - the other issue. Also Lactulose does not work without - Hydration.
The other thing to watch is if medication might be stopping urination. Things like Betmiga to control enuresis.
Best to you
Kevin
Oh I see the rollercoaster ride you've been on, Dee - does your hubby resist the hydration everyone is saying is so critical? Or is he just unlucky, poor dear
Anne, here is what I have gleaned from our experience--
1. UTIs are infections caused by bacteria in the bladder. The retention of urine may be one cause (e.g, in males trapped by the prostate gland crimping the urethra). A design flaw in the prostate location, I think. Managing prostate size is important.
2. The cerebral cortex interprets messages as full or empty bladder. This becomes a nerve function and as the neurodegenerative disease gets worse so does the signaling and therefore bladder control. And aging is an issue as well. Triple whammy -- prostate, PSP, age.
3. Often UTIs are caused by E. coli bacteria some are not. It seems like here the doctors think E.coli first, give Cipro and send you home. OK, except if it is not e. coli, which a couple of my husband's were not, therefore not helped by Cipro and that caused lengthy, unnecessary suffering. Testing is important to get the right antibiotic.
4. So best is, as mentioned, prevention. Yes, hydration. The urologist recommended a daily course of d-mannose (NOT sourced from China), probiotics and Vitamin C. So, first thing in the morning my husband gets d-mannose in water with 2 grams of Vitamin C and probiotics. He lets that get into his system waiting about 30 minutes before more fluid. So far it seems to be helping. I am really trying to avoid both another UTI and antibiotics.
Hope this helps.
Christine
Thanks Christine, It sure does! Hope everyone else is reading so they can bookmark this for their reference library (as I am
Anne G.
UTIs.
Only on men with PSP?
Less or very few on women with PSP?.
Thanks.
Luis
Hi Luis. Yes, interesting - It seems a little different with everyone. Ketchupman below has info on dealing with UTIs on a female patient. This string is collecting a wealth of knowledge.
Anne G.
We had the same problem. The following was suggested by his neurologist, and worked really well for us. He was never in hospital again with a UTI, and never at the doctors for one.
Apparently there are 2 different bacteria that are the main cause of UTIs. One likes an alkaline environment and the other an acid environment.so you need to keep changing the environment so that neither has a chance to take hold.
Billy took vitamin c every day for 2 weeks, the stopped that and took potassium Citrate for 2 weeks. And we kept to that routine. Worked like a dream. Potassium Citrate is the main ingredient in cistitis medication. But is available on its own. We had to source it on the internet as I couldn’t get it in any health food shop or chemist. It’s relatively inexpensive.
Hope this helps.
PSP eventually usually causes incontinence which can prevent a level of cleanliness to prevent a UTI, maybe? My Dad was 80 and at the stage he was falling every day, becoming more incontinent, too. I could tell one day something was off with him, something not right and guessed he could have UTI. His wife took him for his regular annual physical the next day, doc said no UTI. The next day he was in an ambulance (the only time ever,) because of, you guessed it, a UTI.
With PSP, with my Dad, anything added to the situation such as the UTI or even constipation, caused him to have a few hallucinations. It was far different from a healthy person having a UTI. But when the UTI went away with antibiotics, he went back to the same previous level of PSP and no more hallucinations.
So just please be forewarned about that. I'm so sorry for your and your dear's battle and a battle it is, be strong and be blessed.
Was a HUGE problem for my wife. She stayed pretty hydrated via the PEG, but could not control her urine flow. So I either had a Foley catheter inserted in her at times or else I would straight cath her 6-7 times a day. But even then I would often find an extremely soaked Depend pull-up diaper, especially overnight. I think some of her UTI’s were being developed from sitting in a wet diaper overnight. I regret not setting an alarm and changing her a couple a times throughout the night. I was always extremely careful whenever I catheterized her, more careful then some hospital staff, who I saw insert the catheter in the wrong spot and then proceed to insert it in her urethra, a big no-no. She also could not control her bowels and sometimes we would wake up to a real mess in her diaper. That too can cause an infection. I bought my own set of urine test strips so I could determine if her urine was running foul and needed further testing and possibly required her to be on an antibiotic. UTI’s were actually one of our biggest struggles with PSP as it would often give us a false alarm of pneumonia, as they too can cause the heart rate to increase, raise the temperature, and make the person hallucinate.
Ketchupman (hater of PSP)
An ugly situation ... And I guessed this was going to be a battle, hence arming myself ahead of time. Good idea about the test strips..Thanks Ketchupman
George has organic cranberry juice in with his fizzy water every drink, he has had a bigger catheter fitted, he had a size 14 which has been changed to an 18, touch wood not urine infection for about 6 months. Yvonne xxxxx
Good to hear! I also recall reading that fizzy water works better than still water for some reason...
Thanks Yvonne.
Anne G.
There are lots of reasons .It could be your plumbing .I have double ureters [ one too many ] reflux & it is too painful to catheterise ,Spina bifida was seen but NHS doesn't recognise what Insurance companies call preexisting so too risky.
For nearly 60 yrs saw a Prof with extra strong microscope showing what hospital Tests don't show usually 3 bugs.Yet when the infections spread to other parts it was not his remit or to allow me to be referred to tertiary sector as concerned a disability found in Research when system reasonable ethical with a lot less money.
s
Since there there are links to heart failure & sepsis[ I have the graph yet NHS told not to test or transfer hospital apps when moved.
As there is no reasonable research to find underlying cause surely this is madness as there could, in my case, a connection to multi infant dementia & microvascular having had a cardiac 11 yrs ago .Are we all guinea pigs Watchful Waiting then get the notes whether we consent or not ,when we die.
Hi Skybluepink (I love your "handle"!!)
I thought I replied already, but I don't see it here so will try again. Your situation sounds very complicated medically! You sound like you have so much on your plate - and are you diagnosed with PSP as well? If you have constant trouble with UTIs I hope there's some useful info for you in this string. I've found people's contributions very helpful - it's better than a library being on here!
Good luck
Anne G.
Hi there everyone!!!!! Well I thought I would add my two bobs worth to the discussion - I have been having a degree of urinary incontinence (and at times some faecal incontinence) for about 9 months - I took myself off to the "Chair" which is literally just that but it has inserted in its seat something that is equivalent to a TENS machine ....so all I have to do is go into the room and sit down on the seat for about 10 minutes - I also could have been seen each time by the GP but most times I didn't need to. The usual routine for this machine was\ to have 24 visits (with another GP visit at this time as well as at the 16th visit ) and then to have a reassessment - unfortunately for me, the machine did not have a very positive effect on my bladder or my pelvic floor muscles and the urinary incontinence had continued........fortunately for me, I went to see my regular GP around the same time as the final assessment and he suggested I went onto Vesicare tabs, which although these tabs have been absolutely brilliant for the last month, I noticed last night the same sort of behaviour was beginning to kick in again much to my disgust - so I might have to go back and see him again because I know that he started me on the lowest strength!!!!! I also had my first consultation with a Physio who specialises in Pelvic Floor anomalies so hopefully between everything I may be able to get on top of this side of PSP- not for lack of trying anyway!!!!!
So I am hoping that some of my writings may be helpful to at least one person........x x x x
Thank you for the contribution Bindi! I'd never heard of a "chair" such as you describe. Talk about a 360° approach to this problem!
PSP is bad enough..Hope you get lasting relief from the problem
My dad has had frequent UTI’s for the last 2.5 years, only diagnosed with PSP last month. His most significant UTI led to Sepsis. After that episode he had a TURP (prostate surgery). That didn’t help, he continued to get UTI’s about every 5 weeks. He had another procedure to remove a stricture in the urethra. That didn’t help. Finally after going to a third urologist it was discovered that his bladder was not emptying completely (have no idea if that PSP related). This doctor put him on a prophylactic antibiotic and he is straight cathed 3 times a day. He has not had a UTI since. It will be 1 year the end of this month.
Wow thats a clear case for the importance of completely voiding. I read someone else say that too. Thx tlovins.
A friend of mine swears by Blueberry Juice! I've started having my Brother, who was first told he has PSP, now changed to CBD drink 4 ozs. a day. I learned from this site that UTI's are common!! Thank God for this site!! Thank all who share here!! I have learned so much more about these certain conditions from here than from anywhere else.
You're sure right about that!
Thanks for the tip Sarah and good luck to your brother 🔆
Hello
Nice to meet you. We are in England. I found this string very very useful as my husband too suffers from UTIs and had sepsis in September last. He has a 16 suora pubic cathether and I do a citrus flush every 5 days when I have to change his leg bag because it gets blocked. This does seem to keep things under better control. I do also try and make him drink as much as possible and use thickened drinks, probiotics and vit c as well. We were advised that Cranberry Juice helps. At the time he was on warfarin so could not take it but he is not on that now so I may try again.
I feel everything is experimenting.
Ali B
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