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  • Feeling normal ;)

    Hi everyone!! So while I don't think my IC is in remission QUITE YET, I do consider myself to be a success story thus far.

    I feel great, I just have to share this with eveyone, because when I was in agony lying in my bed for 6 months, the success stories thread is where I would come and cry and hope. I never was one to read the horror stories, because I would then think to much and scare the pants off myself.... lol

    I now realize that everyone is SO different, and just because someone else reacts in one way, does not mean YOU will by any means.

    Anyways now for the happiness haha. Yes it does get better, and THANK GOD. (I hope im not jinxing myself) haha.... I have felt better this entire months than I have in 6 MONTHS and I am over the moon because I am finally getting the hang of my body.

    I have been on elmiron for just about 5 months now, and I can honestly say that its working now!! HOORAYYY!

    I also started a month ago taking colostrum 2 pills in the am 2 pills in the after noon and 2 pills before bed. I take Elmiron 2 pills in the morning and 2 pills at night as well. I also take a reactine 4 hours allergy pill in the am with my elmiron.

    Ths is ALL the medication/suppliments I have been taking. I was even able to stop taking the hydroxizine at night.

    PLUS the diet don't forget the diet this is huge. BUT I am happy to say that I have been able to eat everyting I LOVE this month, including MAYO (which means potato salad) mmm SO GOOD. I have not ventured in to tomatoes or alcohol yet, nor do I plan on it. I have thought about chocolate, but Im not about to tempt fate just yet.

    For everyone reading this and feeling lonley or sad or crying in thier bed like I was once, please know that with time/ diet and the right meds it can get better. I was always a skeptic, but its just trial and error.

    I feel normal completley. I go to the bathroom 5 -6 times a day, and I have an incredibly full bladder when I do go. I get up once at night, and then sometimes I don't. I don't feel my bladder, nor do I care about it lol ITS ABOUT TIME. My boyfriend said to me the other morning, "honey! I didn't hear you get up to pee last night! Did you sleep all night!?!" He was as thrilled as I was when I realized that yeah, I had actually slept 8 hours without getting up.

    I have actualy been able to ENJOY myself, and be excited for things that I wasn't before when I was feeling really ill. That is the best feeling in the world. NEVER take the moments you feel good for granted. I know I never will ever again.

    Tonight I am going out for dinner with my best friend and my boyfriend, I am SO excited and I feel amazing.

    KEEP TRYING KEEP LEARNING, its worth it

    Jenn
    Last edited by Jinny Jean; 08-16-2011, 02:55 PM.
    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!


  • #2
    I am so happy for you! I hope to be in your place in a short while.

    Comment


    • #3
      That is so great! It wasn't long ago you were totally miserable. Thank you so very much for sharing.



      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.

      Patient Help: http://www.ic-network.com/patientlinks.html

      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

      Comment


      • #4
        That is WONDERFUL!!!! I need some hope right now. Thank you! I may have to try the colostrum too. After reading about it, I can see why it would work. I'm on 2 Elmiron pills in the morn and 2 right before bed, 2 hydroxyzine (20 mg), and 1000 mg of MSM. I just got some urelle too, and take that when needed. Just call me medicine bags!! LOL!! Anyway, hope you continue to feel this way and can keep enjoying your life. Best of luck to you!!
        ~Valery~
        Dx with IC 3/2009 - Cysto w/Hydro
        Meds: Elmiron (400mg), Atarax (10mg), Elavil (20mg), Pyridium (as needed)

        Comment


        • #5
          Yay for you! I too remember a while ago when you were in so much pain. Sounds like the Elmiron is really working well for you.

          Comment


          • #6
            Yay

            This is fantastic Jenn!

            I wish elmiron wasn't so expensive. 5-6 times is awesome!

            Oh I am thrilled for you! Here is to hoping!

            How much water do you drink btw?

            Huge hugs!

            Claire
            TMJ Dysfunction 2009
            Vulvodynia and/or PFD 2010
            IC, based on symptoms alone 2010.
            PCOS March 2012

            8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

            Currently using: IC Diet...pain meds as needed
            Medications / treatment tried and discounted:
            Fluconazole 150mg 1 per week for 6 months (yeast)
            Endep 25mg - 4months
            Lyrica 75mg - 2 months - FLARE
            Oxytrol patch - I think this caused retention.
            Countless creams, lotions and potions.
            Cystoprotek - no change in symptoms
            PT - for 1 year
            Various herbs and supplements

            Comment


            • #7
              Thanks everyone!!!!!!!!!! I know it was not long ago that I was having a pretty hard time. Here is hoping it keeps looking up for sure!

              I drink alot of water, about 500ml an hour actually, it seems to really help.

              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


              • #8
                Soooo happy for you!! Hope you keep getting better and better- your posts are always so helpful and encouraging! I too have been feeling a little better lately thanks to my uracyst and cystoprotek. Still have flares ect but have some really good days where I go every 3/4 hours. JUst trying to be patient and hope that things continue to improve!!

                Good luck to everybody!!

                Sarah

                Comment


                • #9
                  jenn

                  I am sooo happy for you!! I too have read your posts and am having a hard time. You have given me hope! I wish for your continued health!! What do you mean by part alkazyne diet and part acid??

                  Kierd

                  Comment


                  • #10
                    Thanks everyone, I am so glad that I can give hope I am so thankful for everyone on this site that gave me help initially as well

                    Kierd: When I was having a really hard time at first I only stuck to alkalizing foods only. Alkaline foods are fruits and veggies mostly- and acid foods are things like dairy, bread, meat, coffee, etc. I was eating about 80 percent alkaline and 20 percent acid fods a day. So I ate very little meat and no bread. I ate a lot of quinioa (which is a carb but is also alkalizing) and potatoes and I ate more fruits and veggies than anyone in my family combined haha. Meaning I ate like 12 servings of veggies and fruit ( watermelon and pears) a day. Veggies ussually consisted of carrots cucumber, squash, peas, spinach, celery and potatoes. I would make smoothies with just veggies in them and drink it, about a liter a day. This is how I started to feel better. Slowly I just got better and better-- and then the elmiron started to help more and more as well. If you look up alkalizing diet on google it explains it well. I followed that for about 2 or three months. I didn't eat dairy either, but everyone is different as to what they can tolerate. I loved almond milk and still drink it all the time, as well as regular milk.

                    Now I am back to my normal diet-- minus chocolate, tea, blueberries (they are not safe for ME ...lol) tomatoes, oranges, coffee, (which I never drank anyway), juice and anything spicy. The rest is fair game haha ... I even eat strawberries now and peaches. I don't miss tomatoes anymore , infact I run screaming from them ..lol

                    I think its important to note that the colostrum has really made an improvement. I think it has helped my body heal and boost my immune system.

                    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


                    • #11
                      Jenn

                      That is great! For some reason I thought meats were okay....ugh it is all so confusing the diet.....I have cut out my coffee which is soooo hard and my chocolate as well as all fruit but blueberries and watermelon. No artificial sweetners or food that are premade. I just am trying to not get overwhelmed with the diet and all the trial and error with supplements and meds. ugh. But you give me hope and I am going to focus on that!!! I hope you continue to feel awesome and wish nothing but best for you!

                      Kiersten

                      Comment


                      • #12
                        Kierd:

                        Hey! I dont want to discourage you from eating meat, meat IS OK on the diet and does not bother most people at all... that is just wnat I personally chose to do, but I still did eat meat for sure just not a huge steak or something lol. Basecly what I did is I stopped eating everything that was fake. Sounds like your on a really good track though!! Good luck to you too! If you need anything you can always PM me!

                        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


                        • #13
                          Kiersten, try Carob if you can get it! I ordered mine online. Carob chip cookies tasted identical to chocolate chip ones! So far it's been the closest IC substitue of anything I can't have. I haven't experimented beyond that but I urge you to try them if you are a hard-core chocolate foody. I am not so big on it but every now and then I need a fix. One of those with some milk can make a person feel 'normal' again.

                          Now if they can only come out with IC friendly substitues that taste like tomato and carbonation and Red Bull.

                          Comment


                          • #14
                            Jenn, this is such an amazing news!!! I am so so happy for you
                            I am still on mostly raw food, I also take colostrum and other stuff and hope to have good results. I do not have pain (thank God for that) just burning, frequency and urgency. Hopefully diet with supplements will help, I still take vesicare and elavil for now.
                            Which bran of colostrum do you take, you still take it now?

                            Again, great news, I wish for you to stay symptoms free
                            ***************************************
                            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


                            • #15
                              Hey!! Thank you! Yes I still take colostrum. I take the "NOW" brand?? Its in an orange and blue bottle?? They are 500 mg capsules.

                              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

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