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  • Not in a flare but need help

    Ok so I have IC...yay for me!! I also have IBS now.

    So the past month I have been unable to make it to the bathroom almost every time. WTH??? Please help. I don't full out pee myself but I for sure wet my underwear every time. Just in the past 2 days I think it has happened 3 times. I am so depressed and confused. Anyone else go through this with IC or this a new problem I have??



    Diagnosed with IC 3-30-2003

    Flare ups 1 time a month lasts for days.

  • #2
    I couldn't tell that it was happening but when I was first diagnoised it would seem like my underwear always had a urine smell. I asked the NP who did my PST about it and she said that it wouldn't be because of the IC. Might have been from carrying such a big baby around for 9 months.
    It doesn't seem to happen anymore to me but I would ask your uro about it.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      I wish mine was due to carrying a baby.

      I just don't know why this not is popping up so frequently



      Diagnosed with IC 3-30-2003

      Flare ups 1 time a month lasts for days.

      Comment


      • #4
        Is it urgency? Like you really really suddenly have to go & can't make it? Or is it leakage?
        Kadi

        -------------------------------------------------------------
        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.
        ------------------------------------------------------


        New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
        Source - Pinterest
        "


        Current treatments:
        -IC diet
        -Elavil 50mg at night
        -Continuous use birth control pills (4-5 periods/year)
        -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
        -Pyridium if needed,
        -Pain medicine at bedtime daily, as needed during the day several times per week
        -Antibiotic when doing an instillation to prevent UTI
        -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
        -Dye Free Benadryl 50 mg at bedtime
        -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
        -Managing stress= VERY important!
        -Fur therapy: Hugging the cat!

        Comment


        • #5
          Hi!
          Urgency and frequency both sux! It sounds like you have a little incontinence also. Elavil helps greatly with urgency and frequency which inturn helps with the leakage. Ditropan XL and Detrol helps with leakage......to a point. You need to ask your Uro which would be better for you. Good luck to you! Roxie

          Double Spinal Cord Stimulator surgery 8/09
          Unsuccessful MiniArc sling surgery 12/07
          Dx'd Hypothyroid
          Dx'd Chronic Axonal Neuropathy & Myopathy
          June 2007
          Dx'd IC May 2006 (after suffering for 25+ yrs!)
          First Cysto 1979
          First Hydro 1981 (Many treatments since then!)
          Collagin"Durasphere" injections for urethra
          Gall bladder surgery Aug. 2004
          Gastric Bypass Dec. 2004
          Dx'd: Barrett's Esphogus July 2004
          Dx'd: Vaginal Atrophy 2005
          Bladder surgery 2000
          Dx'd: IBS 2000
          Hysterectomy (fibroids) 1999
          Laminectomy 1989
          Dx'd: Degerative Disk Disorder 1989

          For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
          I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

          Comment


          • #6
            well urgency and can not make it. i try my hardest to make it and it never happens. Then I barely pee a tiny bit



            Diagnosed with IC 3-30-2003

            Flare ups 1 time a month lasts for days.

            Comment


            • #7
              Thanks.



              Diagnosed with IC 3-30-2003

              Flare ups 1 time a month lasts for days.

              Comment


              • #8
                Been there done that! I hate urgency worse than frequency......and I hate that a lot! lol Roxie

                Double Spinal Cord Stimulator surgery 8/09
                Unsuccessful MiniArc sling surgery 12/07
                Dx'd Hypothyroid
                Dx'd Chronic Axonal Neuropathy & Myopathy
                June 2007
                Dx'd IC May 2006 (after suffering for 25+ yrs!)
                First Cysto 1979
                First Hydro 1981 (Many treatments since then!)
                Collagin"Durasphere" injections for urethra
                Gall bladder surgery Aug. 2004
                Gastric Bypass Dec. 2004
                Dx'd: Barrett's Esphogus July 2004
                Dx'd: Vaginal Atrophy 2005
                Bladder surgery 2000
                Dx'd: IBS 2000
                Hysterectomy (fibroids) 1999
                Laminectomy 1989
                Dx'd: Degerative Disk Disorder 1989

                For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                Comment


                • #9
                  yup...would not be so bad if I knew it was going to happen. The main on is after I get home from the store or something and BAM i have to pee so I am rushing rushing and too late I end up leaking.



                  Diagnosed with IC 3-30-2003

                  Flare ups 1 time a month lasts for days.

                  Comment


                  • #10
                    It's always worse when you are in a hurry too! It never fails.....the phone rings.......the door bell rings......and then you HAVE to pee NOW! LOL Life is SO much fun! lol

                    Double Spinal Cord Stimulator surgery 8/09
                    Unsuccessful MiniArc sling surgery 12/07
                    Dx'd Hypothyroid
                    Dx'd Chronic Axonal Neuropathy & Myopathy
                    June 2007
                    Dx'd IC May 2006 (after suffering for 25+ yrs!)
                    First Cysto 1979
                    First Hydro 1981 (Many treatments since then!)
                    Collagin"Durasphere" injections for urethra
                    Gall bladder surgery Aug. 2004
                    Gastric Bypass Dec. 2004
                    Dx'd: Barrett's Esphogus July 2004
                    Dx'd: Vaginal Atrophy 2005
                    Bladder surgery 2000
                    Dx'd: IBS 2000
                    Hysterectomy (fibroids) 1999
                    Laminectomy 1989
                    Dx'd: Degerative Disk Disorder 1989

                    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                    Comment


                    • #11
                      But this is something new. Well I have an appt for the Uro on the 16th of July.



                      Diagnosed with IC 3-30-2003

                      Flare ups 1 time a month lasts for days.

                      Comment

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