Scared of my bladder

[palmtree]

Last summer I had 2 UTIs where i went into amnesia and didn't know what I was doing or saying. The first one was when it was over 100 degrees. I was driving around doing errands and the next thing I knew I was waking up in an emergency room with ice packs all over me and fans blowing every direction.

They asked me. Do you know where you are? I said, no. When they told me where I was I was shocked. I had driven for an hour and a half. Half way across the state in a complete blackout.

Then, as the UTI started to clear up, flashbacks of what happened started coming back to me. I was driving on a highway and looked up and realized I was driving on the wrong side of the road. Everyone honked and I got back on the right side. This would happen again and again and again. Someone yelled, " you're going to kill someone!"

I finally found a parking lot to stop at and kept going forward and reverse crashing into everything. A man yelled. "Call the police!"

The bright lights of the police cars shining on me, I passed out. Then I heard one of them say, "she is bleeding" this must be medical". (The cut on my hand that I had gotten earlier saved me). Then the sound of the ambulance door closing. this can't be real a poke of a needle in my arm, it felt real.

Then, one, two, three they moved me on to the emergency table. 'Get her clothes off of her.' Suddenly my clothes were gone. 'Put a Foley catheter in her' I said, No. We have to measure your core body temperature.

Later, I asked the emergency room nurse where my clothes were. They are still under you. We cut them off.

A friend rescued me. She took me home and her boyfriend drove my car back.

That was incident number one. Incident number two I already wrote about under, UTI/ going crazy.

Only now, I'm just discovering all the foolish things I did. I was texting all these crazy paranoid things to every one and I didn't know who I was writing what to.

I'm so embarrassed. My family understands but I don't know if others do.

Since then, I have been doing everything I can to prevent UTIs, supplements, antibiotics cleaning cleaning cleaning but I've already had one UTI since I got out of the hospital and feel another one coming on.

Would a supra public catheter help solve the problem?

[jreagan70]

Since then, I have been doing everything I can to prevent UTIs, supplements, antibiotics cleaning cleaning cleaning but I've already had one UTI since I got out of the hospital and feel another one coming on.

Would a supra public catheter help solve the problem?

Based on this poster's experience, possibly not, if 4 UTI's per year can be expected.
http://www.msworld.org/forum/showthr...prapubic-caths

Maybe something can be tweaked. Which antibiotic(s) are you taking, what are you using for hygiene, and are you taking D-mannose?

[Tia1]

Oh my goodness! This is scary stuff for sure, but you were sick. Can you print out medical information about your condition and symptoms, offer an apology and leave it there. People should understand.

Are there people that you could monitor you to make sure that you are not having the same problems in the future?

I will be praying for your health and well being today. THANK GOD, that you came through that without any physical scars, I will pray away the phycological trauma that this has/is causing.

[rdmc]

I've heard of other folks having symptoms that present as mental issues, not physical, when they have a UTI. I don't know how old you are, but I think this is more common as we age.

I've had my share of UTIs. One year they were chronic, i.e. I'd get over one and a few weeks later have another.

There are some precautions I take now, along with a medication. You need to see a urologist so they can determine, or at least hypothesize, why you're having the UTIs. A lot of times, with MS patients, retention is the cause of the UTI.

You may already be taking these precautions, but I take D-mannose a few times everyday, and I also keep my urine PH as acidic as possible. Bacteria have a harder time growing in acidic conditions. I use test strips (you can get them on Amazon much cheaper than they are in the drug store) to check the PH and try to keep it around 5 by taking the medication,
Methenamine Hippurate, 1 gm, one time a day, then supplementing with Vitamin C when the PH rises.

I'm sure you're drinking water, and unsweetened cranberry juice, and I know the frustration of doing everything right, and still getting repeated UTIs. The testing that a urologist does should give him an idea of what the reason is. I know some people take a prophylactic antibiotic every day to help keep the UTIs from starting. I think it's important to make sure
they run a culture every time. My urologist's office is very helpful with this. You can stop by anytime you feel like you have an infection and they get a specimen to culture, and prescribe a supply of antibiotics to see you through till the culture comes back.

One more medication that has really helped me is Doxazosine. It's a BP med, but is also used
to help men with prostate problems empty their bladder. Flomax is another med that does the
same thing. My UTIs have happened less often since I've been on this med. That doesn't mean
that I never have them, but they are fewer.

As far as a catheter, foley or suprapubic, I do not speak from experience, but I believe I've read that UTIs can be a side effect of having a catheter. Folks who use a suprapubic cath will chime in on this, I'm sure.

I hope you find a way to reduce your UTIs, especially because of the severe symptoms you seem to have with a UTI. Hang in there.

[palmtree]

I'm doing everything I can. D- Mannose, Cranberry extract, prophylactic antibiotic methenamine. Still hoping for the best and trying to be grateful for those precious days I'm out of the hospital.

[jreagan70]

I'm doing everything I can.

OK. Just checking.

It's important to distinguish between those people who truly are doing everything that's medically possible and those who only believe they're doing everything possible (e.g., because they're doing everything their urologist has told them to do, but the urologist isn't aware of, or isn't using, everything that's medically possible).

So there's a bit more...

Was your prophylactic antibiotic prescribed based on one or more actual urine cultures to find the most effective antibiotic for the organism that's responsible for the majority of your UTIs?

Are you using a topical antiseptic and/or antibiotic as part of your preventive regimen (that's different than cleaning)?

Are you getting regular antibiotic and/or heparin bladder flushes/irrigation?

Considering how severe the consequences of your UTIs are, it's not enough if your urologist says s/he doesn't use a technique because s/he doesn't think it's effective. Every possibility should be tried and proved to be ineffective before it's excused as a treatment.

Are you convinced that your urologist has truly presented all available medical options and that you have tried everything you can?

[KatieAgain]

Find yourself a really good Uro-Gyn.

There was a time, I was getting a lot of UTIs. Bottom line...everything was screwed up.

She helped me get things right, both with natural and conventional meds.

[palmtree]

OK. Just checking.

It's important to distinguish between those people who truly are doing everything that's medically possible and those who only believe they're doing everything possible (e.g., because they're doing everything their urologist has told them to do, but the urologist isn't aware of, or isn't using, everything that's medically possible).

So there's a bit more...

Was your prophylactic antibiotic prescribed based on one or more actual urine cultures to find the most effective antibiotic for the organism that's responsible for the majority of your UTIs?

Are you using a topical antiseptic and/or antibiotic as part of your preventive regimen (that's different than cleaning)?

Are you getting regular antibiotic and/or heparin bladder flushes/irrigation?

Considering how severe the consequences of your UTIs are, it's not enough if your urologist says s/he doesn't use a technique because s/he doesn't think it's effective. Every possibility should be tried and proved to be ineffective before it's excused as a treatment.

Are you convinced that your urologist has truly presented all available medical options and that you have tried everything you can?

Those are some very good suggestions. I feel more hope when I find something else that can be done.

The Methenamine was prescribed by a hospitalist PA. I don't think he payed attention to the organisms that grew. The only thing he said was that the two different infections I've had last summer where cause by a different set of bacteria.

I need to find a new urologist. I moved last year and left my uro behind. Right now I'm going to look for one in the new area. The idea of bladder irritations sounds like a very good idea.

I do use antiseptic hen I cath and keep everything as sterile as possible. What throws me off is the loss of control of my bowels. I have to wear a diaper at night and the germs get in.

So I'm off to find a new neuro. They know so much.

[palmtree]

I'm on it right now! New uro and the flushes sounds like a fantastic idea.

[bluegiraffe]

A probiotic may be a help to get you system balanced from the antibiotics too.
Adding d-mannose along with probiotic, water, and vitamin C as made a big difference for me.

[JerryD]

I agree with KatieAgain and bluegiraff ! I've lived for 50 years with no UTI's. I was diagnosed with PPMS and , suddenly within a few years, I get recurring UTI's!
I have been fighting them off by keeping my urine 'acidified'. I use a powdered form of vitamin C 1000mg per dose in juice in the AM, daily. Occasionally, I use D-mannose in the same manner. But I will do every thing that I can to avoid the catheter route. Good luck

[gwynnf]

I agree with KateAgain....find a Uro GYN.

I have had UTIs over and over again over the past year until my neuro finally referred me to a wonderful Dr! She discovered I had a urine retention problem. I did the usual Urodynamics, but her staff was wonderful.

In my case, I had 2 choices. Self cath 3xday with the risk of recurrent UTIs or try a sacral interstim to help the bladder empty. It has only been a couple of weeks since the trial and then permanent implant (they won't implant the permanent one until you prove at least 50% improvement). I am still self cathing a 1-2 x/day but I am noticing an improvement. They said that bladder retention can be slow to respond.

Good luck to you.

[palmtree]

My doctor finally sent me to a uro. I hope they can do something. The first time I went to one, he discovered that I had severe urinary retention. He was preparing to do a urodynamics test and he was draining the excess urine out of my bladder. The beaker held a liter and it filled up immediately and the urine kept pouring out and pouring out all over the floor. He panicked and immediately told his nurse to teach me to self cath right on the spot.

He offered me inter stim, too but it didn't appeal to me So Ive been self cathing for 6 years with very few problems.

All my catheters are sterile single use and I sterilize and sterilize and sterilize everything. It's strange this should start after I moved to a new place. Maybe my immune system is not as strong now. I am getting older, too.

I wish the supra public catheter was the answer but it doesn't seem to be either.

We will see how all this leads. I hope this PA has some miracle answer.

[gwynnf]

I'm still in the early stages with the inter stim and I'm glad I went this route. I have been cathing with the single use caths for 2 months prior to the trial to see if it was going to work. I'm also on Rituxan which lowers my immune system even more. I had 3 UTIs in my life up until the last year.

I am seeing results with the inter stim. Since the surgery I've had 4 days with the total cathing amount being 100-150 cc....that is huge compared to what it was. We are still working on adjusting the program. I did have the permanent inter stim implanted with no regrets.

Best wishes to you.

[rdmc]

I'm going to jump back in here again. Interesting thread...I did reply earlier.

What amazes me, as with a lot of things MS, is there is no standard protocol for any given problem...and depending on which urologist or urogynecologist you see, they mostly (is that a word...or did I just remember it from the Princess Bride, "mostly dead")each have a different
solution.

I never had UTIs before MS...but my MS was uncovered because of a severe UTI. I had no symptoms, but high fever, and I couldn't walk...so off to the ER I go and they start to put two and
two together which eventually led to the diagnosis.

Now 15 years later, when I look back over my MS history UTIs have been a near constant companion. As with most things MS, I might have a break for awhile, then the old "enemy" will sneak back in and torture me.

In those 15 years, I've seen 3 different urologists (my favorite retired), my present urologist is "old school" insists on a straight cath to run a culture.) I have a wonderful urogynecologist who has taken care of prolapses (another gift from MS), but still prefers I see a urologist for straight
up bladder infections. I've seen a neuro urologist at the university. I've had urodynamics testing 3 times over the years and an equal amount, probably more, of cystoscopies. Never have I gotten the same opinion from any of the urologists. They all acknowledge the problem which is urine retention, leading to UTI, but they each have a different means of dealing with it.

First uro...it's due to retention...and if you self cath, then they will stop (they didn't)

The neuro urologist insisted it was self cathing that was causing the infections...stop it and the UTIs will stop (they didn't)

The uro that insisted if you keep your acidic level high enough, so take Methenamine and pop Vitamin C all day, (I use strips to test and always stay near 5 PH), they will stop... (they didn't)

Use this pill (Flomax for awhile, now Doxazosin) and they will stop (this has been the most effective method, but there are issues because it relaxes the urethral sphincter and can lead to more incontience)...but I've had UTIs even while using this med.

There was the talk of making me the "bionic" woman (or an advertisement for Medtronics...maybe I could collect royalties) An interstim and a pump (I think we decided Kimba would win the prize for bionic woman if she got an interstim because she also has a pacemaker and a pump.)

Then there's the practical, conventional, natural wisdom that says if you drink enough water, or unsweetened cranberry juice or capsules, take the D-mannose faithfully, and a probiotic you'll be able to avoid them. I have and am doing all these things...and I have had respites from the chronic UTIs, but they're always there, lurking in the shadows, ready to jump out and make my MS worse than when I don't have one (I don't quite think the urologists get that fact either...that an MS patient with a UTI is not your usual UTI patient as far as how it affects us overall. We don't
"just" have a UTI...we have worsening MS symptoms because of the UTI)

Anyway, long story short...they (the doctors) all sound so confident with their different ideas to help solve your UTI problem, and we MS UTIers...just don't fit in a tidy box when it comes to "exorcising" recurrent UTIs. We can do everything right and still have them plague us. And since we can say here, what we can't say anywhere else, to my urologist I'd say "Dr. I will follow your instructions, but I've been living with this MS "weirdness" for many years...and even though you think you have "the answer" to my UTI problem, don't be surprised or think it's somehow my fault (for not following a protocol when I did indeed follow it) when I show back up in a couple weeks with another one."