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People who are doing great often don't post - I am one of them!

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  • #1

    People who are doing great often don't post - I am one of them!

    I just wanted to say when it is posted that when people feel good they forget to post and go on with their busy lives - I have to say it is true.
    So many of us really get to the point we feel almost normal and slowly
    post less and less, even if we don't mean to.

    I used to be on here all the time and got such wonderful support and information. I have gone from utter misery to feeling good most of the time.
    I was just thinking about how much it meant to read posts where people got better and wanted to say it is possible and to have hope!!!

    I first started having IC symptoms in Jan 09 and was in so much pain it was crazy. It took until April to get diagnosed. Once I started treatments, diet and meds I slowly got better. It takes time, but you can get better, have hope!!!

    I still take Elmiron and watch my diet, but no longer need to do PT, or bladder instills and haven't for about 1.5 yrs. I now can eat fairly normally, but still have to almost completely avoid pop and coffee or will flare up very quickly if I cheat very often.

    I just wanted to share this quick post to let you know there are probably many people out there that have this condition, but have it under control
    now.....so for those of you newly diagnosed, please know it can get better.
    I never thought I would feel like a "normal" person again, but I do.
    Please have hope and I hope for healthy days ahead for all of us!!!!
    Holly
    49 year old SAHM with 4 great girls and hubby.

    Symptoms started 1/09.
    Officially diagnosed 4/09.
    Symptoms are totally pain, very little frequency.
    Diagnosed with Sjogrens 9/09
    Diagnosed with mild gastritis, GERD. Chronic Heartburn

    Current Meds.
    Quit Elmiron after 4 yrs
    Previousy had instills 6/09-2/10 and a few after that
    Started PT 12/09 - a great help too!
    IC Diet - an unfortunate must!
    Plaquenil (for Sjogrens)
    Prilosec
    Iron pills as tolerated due to iron deficiency

    Doing much better than my first year of diagnosis, but still have to carefully watch my diet if I want to stay out of pain.
    Tags: None
  • #2
    Thank you for sharing your success.

    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.

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    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

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    • #3
      Originally posted by HKay66 View Post
      I first started having IC symptoms in Jan 09 and was in so much pain it was crazy. It took until April to get diagnosed. Once I started treatments, diet and meds I slowly got better. It takes time, but you can get better, have hope!!!
      Did you notice any improvement in your symptoms taking plaquenil? I am curious to know if it will work for IC.

      Comment

      • #4
        So glad you are feeling better & thank you for posting - it gives us all hope!!
        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
          Thank you for your post.
          It would be so nice if all people who got better would make a thread like you because it is so important for the rest of us to see that there is hope
          ***************************************
          I am not an English native.
          ***************************************
          I am starting with raw food diet, juices and green smoothies and salads. Nothing else (rx meds and holistic things like cystoprotek, IC aloe vera) helps with my frequency, urgency and burning. I was also tested and I am gluten sensitive, lactose intolerant, few other food allergies, so all in all it made perfect sense to try go "raw". Fingers crossed

          Right now I am on:
          Vesicare 5 mg
          Other stuff:
          Herbal mix for bladder and kidneys
          Herbal mix for adrenals
          Fish Oil
          Bladder Control
          Colostrum
          Probiotics

          Comment

          • #6
            Holly, So glad you are doing well. I too am leading a normal life & pop in at times to give updates. In fact, I just started a thread to see what you have all been up to this summer. Stay well & have a great summer!!!

            Comment

            • #7
              Originally posted by Landish View Post
              Did you notice any improvement in your symptoms taking plaquenil? I am curious to know if it will work for IC.
              It is so hard to say, I often wonder this myself and wish there was a study on this. I trully believe, at least in my case, that IC is autoimmune related
              like my sjogrens....so, if plaquenil helps autoimmune conditions you can't help but wonder if it woud help some with IC. I have definitely gotten better since being on plaquenil, but hard to say what helped the most. I still take Elmiron 2X a day and did bladder instills off and on for 9 mos and PT for a few months.
              I still totally avoid citrus (haven't tried any though) and can only have limited amts of coffee, pop and chocolate. Most other foods don't cause me flares.
              I did do the elimination diet for close to a year and once I really could identify triggers started adding back food. I am still slowly getting braver
              and was a slow process as I never want to go back to the horrible pain I used to be in 24/7.

              I would love to hear if anyone else had any experience with plaquenil or changes in symptoms once they were on it!
              Holly
              49 year old SAHM with 4 great girls and hubby.

              Symptoms started 1/09.
              Officially diagnosed 4/09.
              Symptoms are totally pain, very little frequency.
              Diagnosed with Sjogrens 9/09
              Diagnosed with mild gastritis, GERD. Chronic Heartburn

              Current Meds.
              Quit Elmiron after 4 yrs
              Previousy had instills 6/09-2/10 and a few after that
              Started PT 12/09 - a great help too!
              IC Diet - an unfortunate must!
              Plaquenil (for Sjogrens)
              Prilosec
              Iron pills as tolerated due to iron deficiency

              Doing much better than my first year of diagnosis, but still have to carefully watch my diet if I want to stay out of pain.

              Comment

              • #8
                Glad to hear how well you're doing. I'm also doing well (pain free) and have been off my meds for a while now, only taking supplements now and then and watching my diet. I never thought I would be back to a normal life either but I am. It took a lot longer than I thought it would for the diet to have an effect but now that I know what my triggers are it's so much easier to stay pain free.

                Comment

                • #9
                  Ditto!

                  I feel completely normal.

                  I can drink coffee, white wine, take a normal daily vitamin, etc. Thank God and the information received on the ICN.

                  P.S. Drinking nothing but Evian water for 2 months!

                  Comment

                  • #10
                    That's wonderful. I was also feeling great, but got cocky and the "brown monkey(Diet Coke)" found its way back into my diet. So here we are again! I see some more Elmiron in my future, but this discomfort is motivation to tread the straight and narrow again! My heart goes out to everyone here who has more severe symptoms. Just my minor little case causes me a lot of distress. So many strong, supportive, and inspiring folks here.

                    Comment

                    • #11
                      Thank you SOOOO much for posting this ! I am in tears, but they are good tears. I wish so bad that people who are feeling good would come back and tell us its gonna be ok, so many of us need hope SO bad and its all we cling to!!

                      THANK YOU THANK YOU. Thi is what I needed today!!!

                      Jenn
                      28 yrs old,

                      I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

                      What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

                      Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



                      Me in my graduation gown!

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