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Thread: Kidney Stones & Ongoing Health Saga That No One Can Diagnose So far

  1. #1

    Unhappy Kidney Stones & Ongoing Health Saga That No One Can Diagnose So far

    Hi,

    You may or may not know that I've been struggling with some health problems for the past 3 months or so. To sum it up:

    Around mid-August, My spasms started getting bad and my nerve pain kicked up as well. I had UA done followed by Culture & sensitivity (C&S) and I had a bladder infection. I was on Macrobid for 10 days. The 10 days passed and I waited another 2 weeks and the symptoms just kept getting worse rather than getting better. I went to the Dr and had another C&S done, it was confirmed that I had a bladder infection (Kleibsella Pneumoniae) so I was put on Cipro 2x/day for 10 days. Symptoms didn't get any better and half way through my spasms went from bad to horrible. I waited another week or so and went back to the Dr and had yet another C&S done..bladder infection, same bacteria.. So I was given Levaquin for 10 days. This time the infection went away (confirmed by C?&S and dipstick test) yet my symptoms just got worse...
    Bad Spasticity (Even with 2 different spasticity drugs)
    Bilateral edema in feet & ankles
    Severe neuropathic pain unable to be controlled with meds

    After some comments from folks here , It was suggested I get checked for bladder and/or kidney stones. Saw a urologist and had the KUB X-Ray one and they found several good-sized stones in my left kidney.

    I had lithotripsy done to "blast" or "crush" the stones into tiny pieces that should pass. My spasticity has returned to normal, yet my pain and edema remain.

    Should the pain and edema slowly go away? I was told the filter the urine to catch any pieces that passed. My 1st cathing after the procedure produced about 1000cc of red urine (I was told ir may be blood twinged for a few days) - The 2nd cathing produced a little red urine but majority of it was gray and looked like sand coming out. however nothing big enough to be caught by the strainer. It's been 4 days and my urine is darker than normal (brownish in color) in the morning.

    Prior to the UTI started this ordeal, my feet and ankles didn't swell a whole lot. When the UTI started, my right foot/ankle started having edema and then got progressivly worse. I had the stones blasted 5 days ago. I keep my feet propped up at night and the swelling goes away some.. The last couple days the edema is worse than it's ever been and it is in both feet/ankles.

    I am drinking at least 64 oz of water per day but do not seem to be getting the same urine output volume as I did prior to the lithotripsy. This morning after 7 hours of sleep, I got up to cath and only output 50 cc! I went again a couple hours later and still only got about 300 cc. I usually get around 4-500 CC after a night of sleep.

    Thanks all!

    Desperately seeking answers.

  2. #2
    Hi Ashleigh,

    I forgot to also mention that I also have had an issue with my bowels starting about a week prior to the procedure. It started with a couple of accidents daily, the stool was liquid like. Then after the procedure, I was constipated for 3 days. I thought it may be from the pain medication they gave me via IV and the antibiotics given by IV. Then it was just liquid that I was passing. I held off probiotics, fiber, and did not take the stool softener again. The past 2-3 days it seems to be producing more solid stool yet still pretty soft. It is usually watery like then a large formation of stool gets out. I'm wondering if whatever is causing the bowel issues is what is causing my other symptoms?

    I called him today to setup my follow up my appointment and he didn't express any concern to his Nurse and she didn't seem concerned. She said it may take up to 3 weeks to pass it all. Since my urine output is lower

  3. #3
    Super Moderator Sue Pendleton's Avatar
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    Normally I would back Ashleigh 100% because she's a pro. In this case where you are not putting out hardly any urine I'd maintain the liquids you currently are downing and call your urologist first thing in the morning and ask for a repeat KUB or ultrasounds of both bladder and kidneys. When you talk to the doc tell him about your output versus input and ask about whether you should up your liquids before the tests. But overall, yes a gallon a day is a good amount for most of us.

    BTW, if you start running a fever skip all the above and just go to the ER!

    Skip what I just typed except the fever part. Back to the expert, Ashleigh, for more help. Or one of the nurses.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  4. #4
    If your urine output is really low --->go to the ER. I didn't catch how you manage your bladder?

    Your BM are loose because you have been taking antibiotics. Taking a probiotic while you are taking antibiotics can lessen that. If your stools do not show improvement you should get a stool culture.

    pbr

  5. #5
    I do ISC every hours and before bed..Coloplast Speedicath are the catheters that I use,

  6. #6
    Quote Originally Posted by smashms View Post
    increase fluids and either call your urologist or got to ER first thing this AM
    Ok this morning I had 900 cc of urine output and it is yellow/clear and not brown.

    I had another incident of watery stool last night before bed and my pain is terrible. I also had spasms wake me at 4:30 a m..I haven't had any real spasticity that baclofen hasn't controlled. I think I have a separate issue causing the edema and pain.

    I don't mind going to ER but I don't know what to have them look for as I doubt they are SCI experts... any ideas?

    Thank you

  7. #7
    Quote Originally Posted by jbridges9 View Post
    Ok this morning I had 900 cc of urine output and it is yellow/clear and not brown.

    I had another incident of watery stool last night before bed and my pain is terrible. I also had spasms wake me at 4:30 a m..I haven't had any real spasticity that baclofen hasn't controlled. I think I have a separate issue causing the edema and pain.

    I don't mind going to ER but I don't know what to have them look for as I doubt they are SCI experts... any ideas?

    Thank you
    At the ER now.. I am tachy at 117 pulse and have a low grade fever .. 99.7 .
    Blood pressure is good at 105/70.

    They got a urine and blood sample. I'm trying to educate them on SCI..anything I might ask them to look for specifically?

  8. #8
    This ER was a joke. Even after explaining the bare basics of SCI to them and where my paraysis started, the doctor paplated by abdomen and asked me if was sore or anormal. What the heck?!

    They did blood work everything good.. No elevated WBCs, which would seem to indicate no infection anywhere? He said my right foot and ankle was red, swollen and warm to the touch so I asked him to do a an ultrasound. They did the venus doppler on my entire right leg and ankle, they said the results were normal.

    The low-grade fever and high pulse seemed to indicate something was wong? As indicated by the increasing neuro pain and returning spasticity.

    He said my urine had a "trace" amount of Leukocytes and he thinks I have a skin infection on my right leg so gave me Keflex 500 mg 4x/day for 10 days. They also gave me Rocephin by IV.

    I really need help figuring this out. I got the antibiotic and started taking it. If it fixes it hey, great. But I need my Plan B, and C and D.

  9. #9
    Quote Originally Posted by smashms View Post
    call ypur urologist as well ideally the one who did the procedure. they will have a better grasp as to what is going on.

    Ashleigh - I called him this morning and he offered no advice. My problem seems to be this bowel issue which started happening a few days BEFORE the procedure but has gotten progressively worse.

    I'm taking probiotics as well as pepto bismol max at max dosage per day and it doesn't seem to be doing anything.

    My neuropathic pain is so extreme right now - Like I have an infection.. I've been crying it's never been this bad. I'm dealing with bowel accidents and severe pain.. Desperately looking for advice

  10. #10
    The ER is for getting rehydrated if your stooling was copious, urine output very little and dry mucous membranes. Once you stabilize from an acute event then you can focus on the overall problem. I would get lab work for stool for C. Diff, general cultures. Keep taking probiotic since you are still taking an antibiotic.

    pbr

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