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My Recipe for an Almost Normal Life

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  • My Recipe for an Almost Normal Life

    I've been coming to this site off and on for five years now. I've had times early on when I was really down and out and coming here has been a life saver.

    I'm not going to make this long but as so many have experienced I spent a few years going undiagnosed. I had a hysterectomy when the doctor's thought possibly fibroids could be causing the pain. It wasn't the source of the pain but I'm glad I had the surgery. Three doctors did cystoscopies but it wasn't until I went to the fourth that did it under anesthesia with hydrodistention that I was able to get treatment.

    I know everyone responds to different therapies but this is what I've found helpful. I take Elmiron, Cystoprotek, an Asacol pill a day and a stool softener. Recently I have been able to add the Ester C gummy vitamins. I have found that when my bowels are not working properly my bladder acts up and feels like it does not hold as much. The gastroenterologist has me taking the Asacol and stool softener. I am one that believes there is a connection between the bowel and the bladder. In addition, I watch my diet very closely and drink at least three 16 ounce bottles of Spring water a day.

    As for the Elmiron I have found that I have to take four a day, two in the morning and two in the evening. I've had two non-related surgeries and have had to go off of the Elmiron. I tried twice to start back up with three and both times my symptoms were worse. I only mention this because if you are taking a small dose and not feeling any relief you may want to talk to your doctor about changing your dosage.

    If I experience a headache or have a need for a pain reliever I can take Tylenol on occasion. When I've had other non related IC surgeries and have had to have pain relief I have found Tramadol to be helpful.

    I still on occasion have a bad day here or there but for the most part I can function fairly well. I do use the bathroom a little more than most people but can forget about my bladder a lot of the time. I do still wish from time to time that I could go back to the good old days of actually being normal. I dream of the day that I can eat chocolate cake, have a glass of wine, eat buffalo chicken dip and strawberry pie.

    I hope this can help some of you that are thinking your situation is hopeless. It's not!

  • #2
    I am glad you are doing well and appreciate you sharing your story. Everyone is different and it is good to see what works for others.
    Jolene

    "Life is what happens when you are making other plans" John Lennon

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    • #3
      Thats great news! Glad you are mostly feeling well these days.

      I too agree that there is a big correlation between the bladder and bowel. If I get at all constipated my bladder starts acting up and I get increased frequency and discomfort.

      Just wondering, how far before the surgeries did you have to stop the elmiron? It has such weak blood thinning capabilities at the doses we take here but I'd be curious what your doctors thought.
      Cindi


      Gelnique for frequency/urgency - works great
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      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

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      Great treatment flowchart on page 19 of the pdf

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      • #4
        Thank you for sharing your success. It gives everyone hope.


        Donna
        Stay safe


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        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

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        • #5
          Originally posted by cmclien View Post
          Thats great news! Glad you are mostly feeling well these days.

          I too agree that there is a big correlation between the bladder and bowel. If I get at all constipated my bladder starts acting up and I get increased frequency and discomfort.

          Just wondering, how far before the surgeries did you have to stop the elmiron? It has such weak blood thinning capabilities at the doses we take here but I'd be curious what your doctors thought.
          I don't recall exactly how long before surgery I quit taking the Elmiron. I think it was ten days. It was the same amount of time that they suggested you don't take ibuprophen.

          There was one thing I wanted to mention. I have actually had three surgeries. During the first two surgeries it was almost as if the doctors were taking a guess as to whether or not I should stop taking it. I aired on the side of caution and did. The last time I came across a physician who point blank told me that he did not know. He contacted a highly respected pharmacy school in my area. I was told they actually looked into the make up of the drug and advised I stop taking it.

          Through all of the surgeries with the ten days off of Elmiron I did not feel a big change in my symptoms. It wasn't until a month or two later that I realized cutting back to three pills from four was increasing my symptoms. I went back to four and started to feel better. I actually tried doing this twice.

          I quit taking the Cystoprotek. I only started taking that after I had been on the Elmiron for almost two years. I was feeling even better but couldn't attribute it to adding the Cystoprotek until I quit taking that as well.

          I also forgot to mention that early on I kept thinking that everything I ate bothered my bladder and there was no correlation between the food and my symptoms. It wasn't until I eliminated everything that could be an irritant and started over that I could tell a difference. It took me quite awhile. I went several months sticking to simple foods.

          Now do you see why I'm not on Twitter? I can never get anything out in one sentence .

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          • #6
            Hi Gardengirl2,
            Thanks for sharing your recipe of normal life and therapy you had that time.
            It might be helpful for others also.
            Hope that you will have your favorite things after complete recovery.

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