Questions About UTIs...

[txrepub4God]

Hi ya'll from Texas. I have been extremely ill this past week & not up to posting or reading much. Had my repeats labs done a week ago to follow-up on the WG, and the urine tests showed a pretty bad urinary tract infection. There was bacteria, mucous, leukocytes, casts & lots of other goodies showing up in there. I didn't see my rheumy for test results until Thursday afternoon, and she stated she wanted to do a repeat urinalysis with a urine culture to find out what bacteria is causing the UTI, so she'll know what antibiotic to treat me with. However, there was a mix-up with the lab order going to the wrong lab, so it'll be Monday before I can even give a urine sample to the lab, and a couple days after that before we'll know what the culture shows.

So, it'll be almost 2 weeks past a terrible urinalysis report before starting any antibiotics to treat it. How do you know a UTI is so bad that you need to be hospitalized to treat it? I'm very worried, as I'm now struggling with a head cold on top of the UTI, and now my urine output has greatly decreased to where no matter what I drink, my urine is barely trickling out. I used to work in healthcare & know UTIs can kill people that are immunocompromised. I don't know at what point I should just go to the ER & pray they admit me to treat it. My kidney function was worse on this blood test than it has been, and that was from a week ago when I was peeing fine. Now I'm super dehydrated no matter what I drink & hardly urinating. I have NO energy, & almost blackout when I stand up. I've had a few low-grade fevers, but nothing constant.

At what point do you go to the ER for a UTI? Thinking I should just wait until Monday, get the UA & culture done & wait to hear from doc, but don't want to make myself uber-sick being stubborn. Thanks.

[Pete]

In the interest of caution, I suggest you go to the ER ASAP. Since your urinary output is low, your kidneys may be shutting down. Hate to be alarmist, but this disease can take you down fast.

[rebekah]

I second what Pete says - please go to the ER. You will be able to get the results of the urine sample fast and can be a admitted and have it treated if need be. The sooner you go the better... the kidney's aren't something to mess around with. You shouldn't have to suffer more than you already have.

[Birdie]

At what point do you go to the ER for a UTI?

Short answer is: two hours ago at the latest.

August 2013 I was in the ER five times with a full time live in nurse dragging me there kicking and screaming a couple of those times. Four different hospitals (no kidding, five times and four different hospitals) couldn't come to a diagnosis because they couldn't get a culture to grow. The fifth time they decided to keep me longer than a few days, and kept a catheter in flushing for days without improvement, they did enough testing to realize that I was very near death. So my suggestion and questions are based on experience/surgery/pain/lost job/six months in bed/six more months of odd diet/etc.

1) Does it hurt when you pee?
2) Does it smell when you pee?

3) Is the pee an unusual color?

4) Passing blood clots or blood in pee?

5) Do you want to avoid six months of incredibly painful recuperation, followed by a year of less painful recuperation?

6) Do you want to avoid bladder cancer two or three years from now?

If you're asking it means you need to go now. You have a problem serious enough to be worried, you are justifiably concerned, you might suffer irreversible injury while waiting for the other option, it may take too long to catch it in time, etc, so go get help before you regret not doing it. To hell with somebody you don't even know thinking you cried wolf. Maybe you are but who cares, certainly not me. Take care of you.

OK, so you may never again ask for my looney advice... Just go. You can't wait two weeks to find out if you have a seriously serious infection, not to mention other possibilities we don't want to talk about.

[mishb]

Ouch :crying: my goodness, will you please just go.

You are a stronger person than me because I cannot stand the pain of a UTI. Please go and get some treatment for it, before it does it's worst on you.

Straight to hospital with you, do not pass GO, do not collect $200 - get going, if you haven't already

[NikkiNicole]

Hopefully you will have already gone to the ER. If not ... please stop reading this and go right now. It could be more than just the UTI. I had low urine output and passed out after a bout w/ the flu and was severely dehydrated, so much that they had to give me more than the usual amount of fluids.
SO GO!!!!!!!!!!!!!!!!!!!!!!!!

[Debbie C]

Well since I see that you are still here reading this.. why are you not at the er.?

[NikkiNicole]

Anyone heard anything??? I am hoping since she hasn't replied to any of this that she actually went to the ER and is being treated and nothing worse has happened????

[txrepub4God]

Short answer is: two hours ago at the latest.

August 2013 I was in the ER five times with a full time live in nurse dragging me there kicking and screaming a couple of those times. Four different hospitals (no kidding, five times and four different hospitals) couldn't come to a diagnosis because they couldn't get a culture to grow.

So Birdie, what was causing your bladder/UTI issues? I'm having the same issue, my urine tests will show bacteria (moderate), mucous, leukocyte esterase in my urine, 2+ WBC esterase, 11-30/hpf WBC (normal is 0-5), epithelial cells (non-renal) greater than 10 (normal is less than 10), hyaline casts. It wasn't showing nitrates, blood, ketones, glucose or protein. I keep getting low-grade fevers every day, I have an upper respiratory infection, I have several times a day that I get severe abdominal cramps, but it does not burn when I pee and I don't know if it smells because my nose is totally blocked.

Since a repeat urine test I did this week with a culture didn't grow any bacteria, my rheumy's nurse said there was nothing I can do. I just know something isn't right, but I have no idea what to do now.

[Pete]

You may want to consider a cystoscopy to see what the inside of your bladder looks like. If you were ever on cyclophosphamide/cytoxan, you may have an inflammation there.

[Birdie]

So Birdie, what was causing your bladder/UTI issues? I'm having the same issue, my urine tests will show bacteria (moderate), mucous, leukocyte esterase in my urine, 2+ WBC esterase, 11-30/hpf WBC (normal is 0-5), epithelial cells (non-renal) greater than 10 (normal is less than 10), hyaline casts. It wasn't showing nitrates, blood, ketones, glucose or protein. I keep getting low-grade fevers every day, I have an upper respiratory infection, I have several times a day that I get severe abdominal cramps, but it does not burn when I pee and I don't know if it smells because my nose is totally blocked.

Since a repeat urine test I did this week with a culture didn't grow any bacteria, my rheumy's nurse said there was nothing I can do. I just know something isn't right, but I have no idea what to do now.

Wow, that's not so much like my problem. I never got a conclusive diagnosis. It was a solid month of pain beyond extreme. The neighbors could hear me screaming on the toilet through heavy block walls of our houses with 20' in between. Every fifteen minutes, 24 hours a day on the days I wasn't in the hospital.

I was passing as many 15 blood clots every 15 minutes, in less than one ounce of urine. Like sharp razor blades passing through an incredibly sensitive place at a slow pace, then getting stuck due to no liquid to flush them out. All of this while enduring many other less painful issues like severe DVT's keeping me from moving most of my body and wearing compression garments to keep swelling from tearing off my skin.

I did not show infection of any kind in urine samples so they demanded it wasn't an infection. No sign of cancer, no sign of anything except constantly passing massive blood clots in very small amounts of almost black (when it wasn't blood red) pee. Over a months time it kept getting worse, MUCH worse. The hospital was incredibly bad, no communication, no explanation of what was going on or what they were trying to do for me.

My live in nurse dragged me to another hospital where the ER doctor decided to treat it as an infection, prescribed medication for infection and pain, then sent me home. A few days later I was back in the first hospital where they kept a catheter flushing for about a week. Nurses constantly emptied large bags of black liquid, about a gallon every two hours. A camera put where you don't want a camera, showed what the urologists claimed was hamburger inside my bladder.

Sometimes someone would say it's an infection but we can't prove that, sometimes they would say... uh, I dunno... then I get "you have Wegeners" as if that explained it... then talk about the phase of the moon... but no real diagnosis.

The only thing I believe helped to stop the progression was prescription/treatment for bladder infection. Until then it was getting worse by the hour for weeks on end. Constant flushing for an extended time certainly helped clean out the blood clots and MAY have been what solved the issue. The reason I think the medication helped is that my fever went from 102 to 105 degrees down to mostly normal, right after starting the meds. It didn't help, not immediately at least, with any other symptoms but the problem stopped getting worse.

Sorry I can't be any more help. My problem was minor for a while before the whining story above, yet it went that sour in a couple days.

I guess from my experience, if you have Wegeners and all else fails then: GO FOR THE ANTIBIOTICS!!!

[Birdie]

You may want to consider a cystoscopy to see what the inside of your bladder looks like. If you were ever on cyclophosphamide/cytoxan, you may have an inflammation there.

Cytoxin damage and cancer were both discussed as possibilities in my case.

Get a camera put where you don't want a camera.

Get a tissue biopsy of anything in there that is not normal.

One last suggestion, listen to Pete, I think he's a little smarter than he looks.

[txrepub4God]

Thanks for letting me know your situation with this, Birdie. My problem is, my last several urine tests have all showed bacteria and mucous, which you would think the 80 mg I take of Bactrim EVERY DAY would be taking care of. I will occasionally feel a tiny burn after peeing, but not like I have in the past with other severe UTIs. I don't have the critical urge to pee and then nothing comes out - I just hardly ever have the urge to pee. I know my kidney disease doesn't help that all, either. The only time I actually have the urge to go, is pretty much all night long when I don't want to. LOL The thing that I don't understand why I'm getting it is the severe abdominal cramps out of nowhere 2-3 times a day. Like, curl up in a ball and groan cramps. I also look bloated in the stomach somewhat.....however, my liver tests are fine. Kidneys are a little more messed up than normal, serum creatinine 1.74 and eGFR 36. Plus, I'm fighting off yet another head cold, which happens every month now. Blowing out the grey rubbery fungal blobs again, sore throat, swollen neck lymph nodes, low-grade fevers, extreme exhaustion, night sweats - just your normal "I feel like total crap" Weggies feeling.

One new symptom I'm having that I've never had before is having a bit of a hard time swallowing. I've got a ton of sinus drainage and am having to swallow a lot, but it's like I'm telling my throat, "Ok, time to swallow saliva!" and my throat is saying, "Huh? Swallow? What in the world is that?" I finally am able to get the saliva swallowed, but it's taking a good deal of time convincing my throat muscles to cooperate. It's very strange as I've never experienced this.

I am going to see my primary care doctor next week, as he is very attentive and I believe will definitely listen to my concerns and figure out if something major is going on besides the Wegs. I like my rheumy, but she's over an hour away and I just haven't felt the concern from her over these latest urine tests. I know my body well enough to know when something just isn't right, and my primary care doctor will usually investigate something every which way he can until he figures it out.

[drz]

Having the inside of your bladder look like raw hamburger is not uncommon after being on CTX for awhile. I was lucky so far to avoid this complication but I did have many bladder infections. One thing that struck me as strange about them was that the proper treatment often changed. One time I get results that it was resistant to a certain antibiotic and the next infection would show that was the best med to treat the infection.

Bacteria are the consummate organism to prove the existence of evolution. They can quickly and very quickly evolve in a manner of hours to a new form that becomes resistant to whatever antibiotic that is killing them off so this can make it very hard to treat such infections.

My guess is the raw flesh from the inflammation is what caused the bleeding and black urine mentioned in a above post along with extreme pain. Hopefully some other meds helped it heal up. Bladder pain is serious issue so find a good urologist that knows about treating Wegs too.

[Birdie]

severe abdominal cramps out of nowhere 2-3 times a day. Like, curl up in a ball and groan cramps. I also look bloated in the stomach

hard time swallowing

OK, here's what sucks. Some of what you added sounds more like my first year of WG, long before the bladder issue we've been talking about. It was a massive number of fungal infections, everything but my toenails and nose hair was affected by many different types of fungi. Cured quickly by a week in the hospital with several different antibiotic IV's running all the time. Seriously not good but prednimask was in effect, pumping me up to function when I should have been crashed hard.

The bloating and cramps was all colon induced across the belly just below ribs. Do you have/know about/been diagnosed with diverticulitis? Is the pain more on the left and down low? That's the most common area for diverticulitis. If you don't know what it is or have only a passing knowledge of it then a bit of google work will make it very clear. It's easily understood with a couple diagrams and a paragraph of text. I complained about that pain for a year any time a doctor started probing my abdomin. Got no attention to it until it was ready to burst and started with blood out the other end too.

Another possibility I've been blessed with is c-DIFF infection. You say your smeller aint working too good so look for color in your #2. If it's sort of orange, almost flourescent, that's c-DIFF. It has a very distintive odor. The c-DIFF discharge can be intermittent. If it's a mild infection then a colony breaks off in your colon and is swept out, so you have to check constantly ---- every time before you flush if you want to catch a glimpse of it. It might be in the water or it might be on the poo. If that's it and it's been going on for a while without MASSIVE problems, then your gut flora/fauna is accepting it, it has become a part of your digestive system function. You don't want it there in any real quantity although a fair percentage of people naturally have c-DIFF. It works for them. New strains produce hundreds of times more toxins than a decade ago. The antibiotic to kill it is very expensive with serious side effect risk. Let me know if it turns out you've got c-DIFF. I'm the all time expert on having it.

The swallowing issue is also familiar. They put me in front of a real time x-ray machine. Watched as I ate and drink an assortment of stuff. It's the only time I was ever told I'm normal. Doctor said that and the nurse laughed, she informed him I'm not anywhere near normal. You might not guess it but I'm a handfull in the hospital. Not in a bad way. The step after the x-ray machine was a camera down my throat. It showed nothing as well. It was as you say... Huh? Swallow? Feel like you have to push food down with a finger. The problem stopped when the fungal infections were cleared up. In fact, everything stopped once the infections were gone. Everything but side effect of medication. I think prednisone is still causing most of the world's earthquakes and hurricanes.