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Questions about remission ending

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  • Questions about remission ending

    I had been symptom free since July 10, 2006. I have been in a flare since last Thursday. Did I do something? Is this seasonal, or am I going to be sick all over again? If I am going to be sick again will it last months, or will I go into remission again? Is this something only God knows, or is there data on this?
    I didn't change any of my meds. I was doing great with Elmiron and Elavil. I went for a urinalysis today to make sure it's not a uti. I am almost hoping that it is, because I don't want to live the way I did before. I am a newscaster who gets up at 3 a.m. to go to work. You can just imagine how hard it is for me to get up at that ungodly hour in a flare, drive 35 minutes, and then be happy on-air. I know things could be worse. I am very blessed, but I was so sick last year that I considered going out on disability. I just want to be able to take care of my kids. I don't want to sit on the couch all day with a heating pad on my bladder.

    The only thing I did different was run on the treadmill. I normally go at a medium speed, but last week I was running really hard on it. Did I damage my bladder? Does that sound crazy?

    Last question: What do I do about the urgency and pain during a flare? (Besides using a heating pad.) I can't take an anti-inflammatory, and I don't want to take narcotics. How will I drive or take care of my kids?

    Thank you all for caring. You have been a great blessing to me during great times of despair.

    All my love,

  • #2
    Hope your flares calms down soon. It could definitely have been the treadmill. Unfortunately, only the universe knows how long a flare will last.

    Also, know you're not alone. It's really hard emotionally to go through a flare after you've been in a remission. Take care of yourself.


    • #3
      HI Allison, Sorry to hear about the flare. They do sometimes seem to come out of the blue! Maybe the treadmill.....maybe not. Have you tried Azo for the frequency and pain? It always helps me when I flare. Hope it helps you and this flare ends quickly and you get back to remission! 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's amazing stuff!!:woohoo:


      • #4
        In Remission!!!!

        Some of you on this site have probably wondered where I went!! All of the sudden, 1 day after Memorial Day, I stopped having IC flares. I went from having 2 instillations at my GYN's office per week and 3 or 4 home instills per week to only 3 instills in the past month and a half!!! I can't believe it! I'm praising God and thanking my doc for helping me get to this point. They had told me that some sufferers could go years without relief and just all the more flares, no more burning, no more pain. I am amazed and still praying everyday that God will help me stay this way. I have started adding some foods back (SUGAR still a big NOOOOOOO!), but am being careful to try a little bit at a time. I was able to drive 3 3/4 hours to my parents' home without any pain and the usual big flare after sitting for more than an hour in a car. I am so thankful that IC is 'leaving me alone' for a while. I hope it lasts! My esphogitis asthma has even gotten so much better, it hardly bothers me at all (except when I swallow larger bits of chicken). If the Fibromyalgia would go away, I would feel alive again!!! I am reading a book by Dr. St. Amand who suggests a protocol of Guaifenesin and no salicylates (sp?). I haven't started it because I want to make sure my doc says it's o.k.. I spoke with a friend of my Mom's who had FM for 15 years. She went on Dr. Amand's program and was FM free in about 3 months. Sounds too good to be true, but I'm going to try it.

        Take care!


        -Bladder surgery to correct reflux-'68
        -Terribly painful periods, beg.@ 13 (most likely due to endometriosis, no dx then)
        -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
        -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
        -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
        PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
        -DX'd with IBS in 2000
        -Rhabdomyolysis in 2001 (has not returned)
        -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
        -DX'd with TMJ in 2000-wear splint
        -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
        -DX'd with Epilepsy -2000
        -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
        -DX'd with Fibromyalgia (2006)

        Medications:MS Contin-30mg@3xday,Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!


        • #5
          It's very possible that the increased exercise could cause a flare. I know I have to stick with "smooth" exercises.

          Stay safe

          Elmiron Eye Disease Information Center -
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          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:


          Diet list:

          AUA Guidelines:

          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.

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


          • #6
            Thank you all so much for your help. I will definitely try the Azo. I am totally giving my bladder a rest from exercising etc. I'm praying this was a one time flare.

            For the person with the fibromyalgia: If I stretch out, take very hot showers and get more than 6 hours of rest a night, I keep the fibromyalgia at bay. The first minute I slack on one of those, my fm flares up.

            Take care,