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  • I’m back

    Hi everyone. After a long silence and period of remission, I’m out of remission and back unfortunately. Have been in and out of the hospital since my last post(not IC related) but have been diagnosed with EDS on top of everything else. Question is this. I had an ultrasound recently on my bladder and kidneys which showed blood debris, scheduled for cystoscopy on March 3rd. Any idea if this is normal or something to be concerned about now? Many thanks
    Diagnosed IC/PBS 4/20/2016 by cysto with hydrodistention(2/20/2016)
    PFD diagnosed 6/2016/ruling out either Crohn's disease or Ulcerative colitir
    Update: Have Chiari 1 malformation, hydrocephalus-currently recovering from VP shunt placement on 1/3/2018.
    Also diagnosed with spina bifida occulta(causes urinary retention-currently working on a solution-accidentally found on 9/13/2017)
    Possibility of either occult tethered cord or tethered cord.


    Current meds:
    Elmiron 400 mg(2 pills in AM, 2 at bedtime)
    Benadryl 50 mg as needed at bedtime(wasn't prescribed for IC originally but does a good job of keeping it in check).
    Zonegran 200 mg once daily at bedtime(for migraine)
    Neurontin 300 mg once daily at bedtime(dosage changed to 900 mg/divided 3 times daily.
    Elavil 25 mg p.o once daily at bedtime.
    Zoloft 50 mg p.o once daily at bedtime
    Norco 5/325 mg p.o 4 times daily as needed for pain after neurosurgery
    Zanaflex 2-4 mg p.o every 6 hours p.r.n muscle spasms(works meh)

  • #2
    It's not unusual for an ICer to have some blood showing. If your doctor thought this is a threatening situation, your cysto would have been scheduled sooner. Try not to worry.


    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Thanks Donna. Very helpful
      Diagnosed IC/PBS 4/20/2016 by cysto with hydrodistention(2/20/2016)
      PFD diagnosed 6/2016/ruling out either Crohn's disease or Ulcerative colitir
      Update: Have Chiari 1 malformation, hydrocephalus-currently recovering from VP shunt placement on 1/3/2018.
      Also diagnosed with spina bifida occulta(causes urinary retention-currently working on a solution-accidentally found on 9/13/2017)
      Possibility of either occult tethered cord or tethered cord.


      Current meds:
      Elmiron 400 mg(2 pills in AM, 2 at bedtime)
      Benadryl 50 mg as needed at bedtime(wasn't prescribed for IC originally but does a good job of keeping it in check).
      Zonegran 200 mg once daily at bedtime(for migraine)
      Neurontin 300 mg once daily at bedtime(dosage changed to 900 mg/divided 3 times daily.
      Elavil 25 mg p.o once daily at bedtime.
      Zoloft 50 mg p.o once daily at bedtime
      Norco 5/325 mg p.o 4 times daily as needed for pain after neurosurgery
      Zanaflex 2-4 mg p.o every 6 hours p.r.n muscle spasms(works meh)

      Comment


      • #4
        You're very welcome.


        Donna
        Stay safe


        Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
        Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

        Have you checked the ICN Shop?
        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

        Patient Help: http://www.ic-network.com/patientlinks.html

        Sub-types https://www.ic-network.com/five-pote...markably-well/

        Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

        AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

        I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
        [3MG]

        Anyone who says something is foolproof hasn't met a determined fool

        Comment


        • #5
          Yes Donna is correct it’s not unusual, I always have blood in my Urine from IC. Hope you feel better.

          Comment

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