UTI help

[REG53]

Kimba, I do drink 8 - 8oz glasses of water ea day. I will ask my urologist about the Uro-Mp med, the Botox and saline flush. I also have them lying down. Thanks Kimba

[Kimba22]

Kimba>> I have been thinking about a suprapubic. Do you have bladder spasms?

Hi REG,

You're right about these catheters still having challenges. I wish there was a perfect solution, but there isn't. I have bladder spasms as well. From what I understand, they're quite common with indwelling catheters.

Antispasmoditic medication can be prescribed to help alleviate them, or Botox if they don't work. My urologist prescribed Uro-Mp, and it usually helps. I just don't take it unless it starts happening a lot, because of some of the side effects I get from it.

I get them much more now than I used to. I usually get them when I'm laying down, so most likely my catheter isn't draining well enough. I also think because my bladder has gotten so much smaller after being constantly drained for years, it's easier for it to get irritated by the catheter. It's not a pleasant sensation, but short lived. Mine don't seem to hurt as bad yours.

As far as sediment, have you ever had your bladder flushed out with saline solution? That might help. My urologist also stresses the importance of drinking lots of fluid, especially water, to dilute the urine.

I find having a suprapubic catheter is more comfortable than an urethral one. There's also less risk of damage to urethra with this one.

Best wishes.

[SaraAM]

Thank you for your responses! I will read the articles and look into what you have told me. I'm so ready to feel good again.

[REG53]

Hello Sara, I am sorry you are having such a hard time with UTI's. I have a neurogentic bladder (retention). I can't remember the year I started self-catheterization (not fun) I was having a lot of uti's ea year no matter have clean I tried to be. In 2020 my urologist wanted me to try a foley catheter which is an indwelling catheter that is put in through the urethra. It also stays in by a balloon. I have only had 1 uti since.
It still has it's challenges if it gets kinked it causes a bladder spasm which burns and hurts so bad but sometimes it gets stopped up with sediment when that happens I have to remove the cath myself and call home health nurse to put another one in. This has happen quite often as of late.
I wish you all the best whatever you chose.

Kimba>> I have been thinking about a suprapubic. Do you have bladder spasms?

[Kimba22]

Hey Kimba!

The last link that you posted (tips to reduce UTI's) didn't work, but I think I found the right one from Healthline

Let me know. Thanks!

Hi Koko,

That's the correct one, thanks!

[KoKo]

Hey Kimba!

The last link that you posted (tips to reduce UTI's) didn't work, but I think I found the right one from Healthline

Let me know. Thanks!

[Kimba22]

Hi Sara,

So sorry to hear about your UTI's, and the kidney stone. Hope both can be resolved soon with out any problems! Been there with the UTI's, and know how dangerous they can become. Have you had testing done to determine the cause of your UTI's?

I have a suprapubic cystostomy, not an ostomy, in my abdomen. A catheter is inserted into it to drain my bladder. I'm wondering if you meant that instead?

Several years ago, I started getting more UTI's. Maybe 3 or 4 a year. Over the course of few years, a couple led to kidney infections that required a hospital stay and IV antibiotics.

Then, one year during an inpatient rehab stay, I suddenly started getting them back to back. Three turned septic. Once the infection even went to my heart, and was diagnosed with endocarditis. I needed surgery and six weeks of round the clock antibiotics after that happened.
The infections also caused multiple major back to back relapses. The UTI's and relapses sent me back and forth to the hospital, and inpatient rehab, for several straight months.

After I finally recovered enough to see a urologist, he did some bladder testing. That revealed that even after I emptied my bladder, I was still retaining some urine. That was giving bacteria an environment to grow.

He wanted me to get a suprapubic catheter from the start, but when I hesitated, he mentioned intermittent self cathing. I wanted to try that first instead and that worked to stop the UTI's. I also had urge incontinence, and completely emptying my bladder every 4 hours helped that problem, too. I did that for years, until it became too difficult for me get to bathroom because of mobility problems.

That's when I had move on to a suprapubic catheter. My catheter is changed every 3 to 4 weeks. A small balloon near the tip of the catheter is inflated with about 7cc of saline after it's been placed into my bladder, which holds it there. The wound never totally heals, and the opening can close if the catheter came out and wasn't replaced within a short period of time, requiring another surgery. If it's no longer needed, the site can be allowed to heal closed. An ostomy is permanent.

I've been fortunate to have only had a few, sporadic UTI's since this all started. It's been more than 10 years now. I drink plenty of water every day (2 - 3 Liters), per my doctors orders, and also haven't gotten any kidney stones (knock on wood). I also had to go off the DMT I was on, Gilenya, because my WBC counts were getting low, which also made me more susceptible to infections.

Just FYI, there are increased risks of UTI's with the use of catheters, (and kidney stones with indwelling dwelling catheters), so it's not necessarily the perfect solution. But, there are things that can done to help to minimize the risk.

I'm kind of scared to get one since my daughter's 95 lb. dog likes to jump up on my bed right in the middle of my stomach.

I don't think it would feel that great if 95 lb. dog were to jump on your stomach after having it done, and you also wouldn't want it to cause damage to the area. We have a larger breed cat, who sometimes jumps on my stomach. This hasn't caused any problems with my site, but it is little sensitive there when she does it, and she only weighs about 17 lbs. Talk to your urologist about your concerns.

Please keep us updated, and hope you find answers that solve your problem. Best wishes!

Additional info about both procedures ~

https://my.clevelandclinic.org/healt...22476-urostomy

https://www.healthline.com/health/su...heter#takeaway

Some tips to reduce UTI's ~

How to Prevent UTI: 9 Ways to Avoid a Urinary Tract Infection (healthline.com)

[pennstater]

Hi SaraAM. I am really sorry to hear about your UTIs and the hospital stay. Sounds like a difficult journey.

I really can't offer any insight. If you don't mind a few questions, is this a new problem or have you been battling multiple UTIs for a long time? Do you know what was causing the UTIs? Were there other treatments tried before to prevent UTIs?

The last 2 years, I have had 8 UTIs, but none as severe as yours and all responded to antibiotics. So I have been trying to eat Activia yogurt each day, take a probiotic, and also take a prescription (Methenamine Hippurate) that fights bacteria in the urine tract. The Rx makes me nauseous off and on. So he said if I stay stable for a year, I can try off it it and see how I do with just the Activia and probiotic. 3 months stable and counting.

I think it is a great idea to talk to the urologist about the UTIs - wise to get a second opinion. I do hope you can clear the current infection soon.

Hopefully someone will come along who has had the procedure and can offer their perspective.

[SaraAM]

I've had so many UTI's, the urologist wants me to get an ostomy for the bladder. I was in the hospital for sepsis the end of Jan. into Feb. I was on IV antibiotics and oral when I came home I felt so good, finally thinking clear again. I got another one then and still not over it.

I have an appointment to an urologist at UT Southwestern to check about getting a kidney stone taken out. I'll be talking to him about all the UTIs.

Does anyone have one? I'm kind of scared to get one since my daughter's 95 lb. dog likes to jump up on my bed right in the middle of my stomach.