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  • #16
    Jinny Jean - how are you feeling?

    My first post ever to this website. I have been following your posts and I feel like I know you.....

    How are you feeling? Still good? I am waiting for my colostrum. Supposed to arrive on Wednesday. Sounds like it did the trick for you!

    So glad you are feeling good.

    -Lauren
    My current regimen:
    Dancing, Laughing, Petting Emily and Louise - my shihtzus

    Tried and gave up on:
    Diazepam
    PFD
    Warm Baths
    Millions of supplements
    Elmiron instillations - did 5 weekly instills and did not help. Gave up.
    Oxytrol patch - no consistent relief after 3 weeks and very expensive
    Sanctura XR - tried for 6 weeks with no consistent relief
    Imipramine - tried for a week, but started to have a "hesitant" void - kind of twitchy.
    PTNS - doctor's office was disorganized, appts took hours and gave up after 4 treatments
    Vaginal valium suppositories - not as effective as taking valium orally
    Cystoprotek - ridiculously overpriced - taking same supplements from CVS
    Elmiron - 100mg in the morn, 200mg in the late afternoon - no results after 1 year
    Elavil - 25 mg at night- no consistent relief and 5 extra pounds
    IV Vitamin C - the only person with an allergic reaction to Vitamin C drips
    Hormones

    Comment


    • #17
      Hi!!! Aww Im so glad that I can help others, makes me feel sooo good
      I feel great. Really good. Im taking up to 8 colostrum a day now, and I feel wonderful!!! Not sure if it is soley that though, I know the elmiron has made a huge difference.

      I work two jobs now, so im starting to roll the money back in now thank god. For awhile there I was losing so much! Just not being able to DO anything!!... We all know how that goes eh? But yes I am still feeling great. Just had my period and had no problems there either, I was even able to wear a tampon, which I don't normally do because it aggrivates my bladder.. but no problems what-so ever...! Right now im sitting on my deck with my computor, with a bowl of life cereal haha ...

      life is good


      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!

      Comment


      • #18
        Jenn- I'm curious about the colostrum... How long did it take for you to notice an improvement with it? I go on holiday next Monday- im wondering whether to get some so I can feel as good as I possibly can. Or whether it might flare me for the holiday if it doesnt agree with me?? Xx

        Comment


        • #19
          Wow, I am surprised you can eat Life cereal! I can only eat the organic cereals that are not vitamin fortified, since the vitamins add so much acid. I'm jealous!!
          ~Valery~
          Dx with IC 3/2009 - Cysto w/Hydro
          Meds: Elmiron (400mg), Atarax (10mg), Elavil (20mg), Pyridium (as needed)

          Comment


          • #20
            haha Yes I feel very blessed that I can eat life cereal...mmm its my favorite.
            The colostrum probably started working about a week after I started taking it... I started with just 3 a day one in the morning one in the after noon and one at night.

            Now I take 6 to 8 a day depending on the day. Two in the morning two in the afternoon and two at night.

            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!

            Comment


            • #21
              Follow-up Q

              I have sort of a question regarding dosage. I've been through two brands now, one maybe better than the rest. I also feel that the first was a little generic (you never know for sure who's bottling it and whether you're getting what you are supposed to). The first brand said take with food, the second brand, same ~500 mg capsules, said take on an empty stomach. Huh?

              Either way, I feel it's definitely made a huge difference (that plus Cystoprotek, which I try to take at different times in case they counter-balance each other).

              Oh, and a long commute has apparently damaged my psoas (hip and pelvis) muscles. Probably from being in constant tension against the pain. So, that's what I'm trying to beat now.

              I'll check into the NOW brand to see if it's the same. I'm currently taking Symbiotics.

              Comment


              • #22
                I am also taking Symbiotics plus kosher and I think they are great quality, after being on them for 2 months with raw food diet and other herbs, I am finally doing better and I am able to go to classes normally which for me is a little victory. Fingers crossed it will stay at least the same if not getting even better over time.
                ***************************************
                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


                • #23
                  Hi Bojana. Would you share more about your diet now . I am also trying now gluten free diet to see if I will do better. Do you feel better now on this diet ? Sorry for so many questions , but you know how desperate one can feel to find some help.
                  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                  Symptoms since 2005
                  Diagnosed with IC october 2009 via PST

                  Comment


                  • #24
                    I am not an expert and not saying that this will help others but diet sure helps me. I eat only fruit, veggies, green smoothies, fruit smoothies, time to time some baked potato, quinoa and salads. I am on this for 2 months now. It made sense because I was tested and I am lactose intolerant (I cant have even lacto free dairy products), gluten sensitive and few other food allergies. So I went raw and I am not sorry. I do take herbs for bladder, stomach, adrenals (I have weak adrenals as well), and of course colostrum and I can honestly say that after 2 months on this I am better than I was in long long time. It does say you should try it out at least for 6-12 months (if it does not bother you or make you flare more) to really see if this is something for you. Yes the first few weeks detox was not easy and I had some more frequency (which is normal when you start with raw) but now its better. I only take vesicare every second day now and I don´t need atarax, elavil or pain meds.

                    This is what I am doing and I am better from it but I can not promise anyone that they might get better as well with raw. Many do and I know few ladies personally who healed them selves with raw food and herbs (yes healed although medical community would probably argue and say they are in remission - I don´t care what you call it, remission or cured as long as I get better). I am sticking to colostrum now and I plan to take it at least for 6 months and then stop to see if it makes difference.
                    ***************************************
                    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


                    • #25
                      colostrum

                      Jinny, are you still taking the colostrum. I thought I read a post that you quit all supplements ans was just taking Elmiron. Just curious, getting ready to start the colostrum.

                      Comment


                      • #26
                        I too am getting ready to start colostrum.....tho my urologist was skeptical do to never hearing of it. Is there any documented proof that this works?? I have been using cystoprotek too.

                        Comment


                        • #27
                          Hey!!! Yes still taking the colostrum. I only stopped taking the suppliments when I was first having trouble (way before I started colostrum) because I didn't know what was causing my baldder to be so upset. At that point I was taking Greens plus, salmon oil, garlic, vitamine E, and acidophilous. I wasn't taking colostrum at this time though. The only things I take right now are Elmiron, the antihistamine reactine for seasonal allergies, hydroxizine maby once or twice a week at night just so I can sleep ( I only take it when I know I have the next day off) and I take colostrum and salmon oil.

                          Has been working great whatever I am doing so far! lol

                          Good luck with the colostrum!!!!

                          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!

                          Comment


                          • #28
                            Hi Jenn,
                            So happy you are doing well--I love success stories!
                            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


                            • #29
                              Originally posted by kierd View Post
                              I too am getting ready to start colostrum.....tho my urologist was skeptical do to never hearing of it. Is there any documented proof that this works?? I have been using cystoprotek too.
                              Yes, there have been studies done on it and from what I read in those, it has proven to be helpful. Unfortunately there are many doctors who know next to nothing about nutritional supplements. I saw a news story that said most doctors do not have any nutrition classes or training in college. Just type colostrum or colostrum studies in google and you can read all about it.

                              Comment


                              • #30
                                amy09

                                Thanks for letting me know about that, I am def going to look online and am going to start it, anything I can do to help my bladder non chemically I will
                                Kierd

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