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  • Voiding Diary

    I just can not get over this. I decided to start keeping a voiding diary. My doctor did not ask for one but since he put me on Macrobid for the next 6 weeks to make sure my problems are not bacterial I thought it would be a good idea to have a record of how much I am going as well as pain that I'm having to show him and to help me remember what the next 5 weeks are like. I still can not get over how many times I actually go in a day though. It's 7:35pm here, I woke up at 6:50 this morning and started the diary then. I have gone 27 times so far today!! This isn't even a really bad day for me, I just drank enough water to keep my urine from becoming too concentrated. I guess I never realized how many times I actually go in a day. I knew it was a lot but wow.
    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

  • #2
    That's exactly why you need to do a diary. Sometimes when I think back on a day, it doesn't look too bad because I don't even know how many times I had to go. When I count them, I am amazed. It's almost like you just go out of routine and you've been so many times it's just a matter of going and then getting on with things.
    I figured I was doing well today then I realized I had only had one glass of water - then the burning started - argh
    Let's stick together...
    Maggie

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    • #3
      I remember having the same reaction. I usually averaged about 25-35 times/day when I did my voiding diaries. Now it's much less, though, since I am fortunately one of the people for whom Elavil works really well (knock on wood!).

      I hope your voiding diary helps get to the root of the problem so that you can start to feel better! (It was also a great tool for potty training at our house, I made my son his own "potty diary" and encouraged him to go whenever I did -- worked great!)

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      • #4
        Me 2 Christine. I was shocked. I go about 15-20 times a day, and im on tons of medications for this. AND THIS IS A "Good" day!!! Well its great to be proactive. I did the same thing for my uro. Im getting a second opinion because what hes doing isn't working...see sig Good luck to you. I hope your doctor gets put into high gear when he see how much your suffering!

        Erika
        IC diagnosed officially via cysto/urodynamics 1/26/07

        Grade II Endometriosis diagnosed via lap 12/11/07

        "Fall down seven times, Stand up eight."

        "Life is a tragedy for those who feel and a comedy for those who think."

        Current Treatments:
        Interstim Since 5/25/07!
        Birth Control

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        • #5
          Thanks humpie! I think this uro is really good, he's just ruling everything out before we go ahead w/ the hydro to verify that it is in fact IC. I don't really think the antibotics will work because I've never shown any bacteria on a culture that I'm aware of but at least we'll know for sure.
          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


          • #6
            My uro did the same thing with macrodantin. I told him that it felt like it was "burning my badder" and making it worse! This was before I had been diagnosed or even knew what IC was...its funny how we know our bodies. Well anyways give it a whirl, if it bothers you let him know, although my uro thought it was a big joke when I told him the antibiotic made things worse. I guess we all have personal issues with certain substances...lets hope he gets you in after this course of antibiotics. Although cystos are no party, for me at least I have peace of mind now...Im not crazy after all...

            Erika
            IC diagnosed officially via cysto/urodynamics 1/26/07

            Grade II Endometriosis diagnosed via lap 12/11/07

            "Fall down seven times, Stand up eight."

            "Life is a tragedy for those who feel and a comedy for those who think."

            Current Treatments:
            Interstim Since 5/25/07!
            Birth Control

            Comment


            • #7
              One night, I taped a piece of blank paper on the bathroom door, and put a pen nearby. Every time I went to the bathroom, I made a check. In the morning, I had 22 checkmarks! I had been wondering why I was so tired all day... LOL

              Fortunately, that was some time ago. Although I still have severe pain problems, I now only get up once or twice a night. So -- have hope, it can get better!
              Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
              Wishing you happiness and good health, and all the best out of life.

              Peace, Carolyn
              ___________________________________________________

              Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


              On the Beach with IC

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              • #8
                A voiding diary can be a real help. I haven't done one for a while, but for the past week or two, I'm finding myself looking for restrooms everywhere we go. If I don't feel better soon, I'll start a diary.

                Donna
                Stay safe


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