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  • New here, I really don't want to post

    because, it will mean it is for real. lol
    I am 36 and have 2 children who in a couple of days for one child and two weeks for the other one will be 6 and 16. I also homeschool them.

    I was diagnosed with I.C. the last week of March, oh joy. I have a Cystoscopy & Hydrodistention scheduled April 12th. Would have been the 1st but, I forgot to mention that I might be allergic to latex.
    So,while I wait I have been reading everything I can about this disease. I found the diet and that freaked me out more than the i.c. does. I was planning on waiting to start the diet until I had the test done. But, now I have to wait a week and a half for them so, I started the diet. I will say it is not bad at all. I am feeling a little better and not having to get up at night as much. Hopefully, I can shed a few pounds in the process.
    I don't feel 100% better. I would say 85%. But, that is awesome!

  • #2
    85%? That's real awesome!

    The diet can seem overwhelming, depressing, and outright deprivation at first but in time I think it gets easier. Sometimes now I'll take a taste of something that I once thought I couldn't live without and just think, "Yuck!, I can't believe I used to like this stuff!"

    Sorry you had to join us, but......
    to the ICN!
    Vicki
    "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

    Comment


    • #3
      diet helps...i admit i do cheat every once in awhile though. i think thats anyone on any type of diet...
      Newly IC diagnosed as of February 2011.

      Medications I'm on that seem to work:
      Zoloft- one once a day
      Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

      Failed Meds:
      Elmiron-after 4 months,digestive side effects got to be too much
      tramadol-allergic
      DMSO treatments(5-6)
      probiotics

      THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
      AROMATHERAPY-candles,incense
      Village Naturals Aches and Pains Peppermint Bath Salts
      Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

      ACUPUNCTURE/HERBS
      Significant pain relief so far.

      MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

      Add me on facebook Angela Hasic

      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      Lord, make me an instrument of your peace;
      where there is hatred, let me sow love;
      when there is injury, pardon;
      where there is doubt, faith;
      where there is despair, hope;
      where there is darkness, light;
      and where there is sadness, joy.
      Grant that I may not so much seek
      to be consoled as to console;
      to be understood, as to understand,
      to be loved as to love;
      for it is in giving that we receive,
      it is in pardoning that we are pardoned,
      and it is in dying [to ourselves] that we are born to eternal life.

      Comment


      • #4
        Welcome to the ICN,

        If you find the diet too stressful try not to let it get to you that much, the stress from that alone will cause you problems. I just looked at it like medication. What I try to do now is really avoid the most terrible things. My Dr was telling me that what I should really avoid it caffiene, alcohol, tomato based foods and citrus, for me that works well. I know that other's find that perservatives and other chemicals cause them a lot of problems. Some of us aren't that sensitive. In the beginning it may seem like it isn't worth it all, and very restrictive. I think in the beginning is when it is most important, settling your irritated bladder is very important. Later on you may find that you can add back some items. Or like me, many items. It doesn't take long to settle into a routine of what you can and cannot have. It is a change but like other's said, all diets are.

        85% better is terrific. Hopefully it won't be long till you are on your way to great days!

        Sandra
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment


        • #5
          to the IC Network family.

          I know the diet can be a challenge, but you're already discovered it's well worth the effort. It can also be an adventure --- we have several members who share ideas and experiences with foods that are IC safe.

          Sending warm hugs,
          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


          • #6
            Originally posted by bellem04 View Post
            because, it will mean it is for real. lol
            II don't feel 100% better. I would say 85%. But, that is awesome!
            I know what you mean about posting to make it real. I was the same way. I'm still in my very early stages of this. I was just diagnosed a few days ago. I have yet to go on a treatment plan or meet with my urologist because the earliest appointment that I could get is two weeks away! So, I will suffer in the meantime and hope that my diet will help. It's good that you are improving as well. Prayers for even better days.
            Widowed at 44...and now IC!

            Comment


            • #7
              new here and didn't want to post

              Hi,
              Sorry you have to be here, but also glad you found us.
              How excellent that you're feeling 85% better after starting the diet. As others have said, it's not so bad once you get used to it, and maybe you'll be one of those who can add foods you like back in after a while.
              I hope your cysto/hydro goes well.
              Let us know.
              Laurie

              Comment


              • #8
                Thanks all for the warm welcome!

                I am working the diet and the diet is working for me. I think doing weight watchers for a year and a half has helped me with getting my head around the new diet. I look at it as the new, new plan. I am eating foods that I was avoiding for so, long because of too many points. I can't believe how salty regular Ruffles is but they still taste pretty good.
                I also have the best mother-in-law ever! I printed the diet off and she knows it better than I do. Which is great since we live with them and she is the cook. She always makes sure I have something tasty for supper.
                So, I have great support and that makes things easier too.

                Comment


                • #9
                  Trying to be on a diet and the IC diet is really complicating for folks like us. Just really be aware of artificial sugar. Artificial sugar is a necessity to be on a reg diet but it is tortuous for people with IC. It makes me bloated severely (IC belly?) and causing ample amounts of pain. I think artificial sugar and alcohol bother my bladder the most!

                  P.S I'm new to this site as well. So far it's been wonderful and I feel like I have a whole new family! Welcome and keep in touch!
                  IC symptoms since 2003
                  Diagnosed with IBS in 2004
                  Diagnosed with IC in 2009
                  Pelvic Floor Dysfuntion 2011
                  Possible Fibromyalgia

                  Meds that don't work for me:
                  Flexeril, Cymbalta, Librax, Buspar,Vesicare,
                  Ativan, Pyridium, Amitriptyline, Elimiron

                  Meds taking now:
                  Tramadol, Prelief

                  In order to see the rainbow you gotta make it through the rain; praying for them better days!
                  "Be kinder than neccesary for everyone you meet is fighting some kind of battle"
                  Love my life as a Mommy and Wife!

                  Comment


                  • #10
                    update

                    Totally confused!
                    Had my Cystoscopy & Hydrodistention done and the doc. says that everything was healthy looking. Since I didn't have any improvement I don't have I.C.
                    He put me on some meds for overactive bladder. Not helping.
                    I went back to my gyn. and he can't believe the uro doc not giving me anything for I.C. I told him what the uro said so, now we are going to check the possibilities of endometeritis. Surgery is on the 20th.
                    I have stopped the I.C. diet because I don't have it but, I feel horrible so, I will probably go back on and see if I feel better. ( Uro. thought I was nuts for even being on it.)

                    I hate feeling pregnant without being pregnant!

                    Comment


                    • #11
                      Originally posted by bellem04 View Post
                      Totally confused!
                      Had my Cystoscopy & Hydrodistention done and the doc. says that everything was healthy looking. Since I didn't have any improvement I don't have I.C.
                      He put me on some meds for overactive bladder. Not helping.
                      I went back to my gyn. and he can't believe the uro doc not giving me anything for I.C. I told him what the uro said so, now we are going to check the possibilities of endometeritis. Surgery is on the 20th.
                      I have stopped the I.C. diet because I don't have it but, I feel horrible so, I will probably go back on and see if I feel better. ( Uro. thought I was nuts for even being on it.)

                      I hate feeling pregnant without being pregnant!
                      Bellem, Ive heard of people who do not have the glomerulations or ulcers on their bladders but still have IC. I dont think that that one test can be an absolute diagnosis of IC or not. Can you find another Uro to work with? I would stay on the IC diet for now if you feel that it was helping you. I think the Uro needs to be educated alot more about IC. Unfortunately many uro's are only used to dealing with old men and their prostates and forget that us women have a urinary tract system too
                      Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

                      “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus

                      Comment


                      • #12
                        I have to agree that a second opinion is a good idea.


                        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


                        • #13
                          Originally posted by Becky Jane View Post
                          Unfortunately many uro's are only used to dealing with old men and their prostates and forget that us women have a urinary tract system too
                          I so thought I was in the wrong doctor's office the first time. All I saw in the office were posters of penises. lol

                          My gyn tells me I have I.C. and will give me the meds. when I tell him to give them to me. I want to make sure what it isn't before I start the meds. Not sure if that is the right way to go or not?

                          I so don't want I.C. but, in the back of my brain I know this is what I have.

                          Comment


                          • #14
                            Originally posted by bellem04 View Post
                            I so thought I was in the wrong doctor's office the first time. All I saw in the office were posters of penises. lol

                            My gyn tells me I have I.C. and will give me the meds. when I tell him to give them to me. I want to make sure what it isn't before I start the meds. Not sure if that is the right way to go or not?

                            I so don't want I.C. but, in the back of my brain I know this is what I have.
                            Im sorry that its probably IC I think thats a good idea though, to try and rule everything else out first. Many times uro's dont even do the hyrdro and cysto anymore. They make sure that its not other things and diagnose by exclusion. It sounds like your gyno is doing that so maybe thats the doctor who will be better at treating you for now
                            Diagnosed with IC in 1997. Currently taking Elmiron, Hydroxizine, Aleve, Ditropan, Glucosamine, Chondroiten, MSM Quercitin, Vitamin D, Probiotics, Co-Q 10. Also working on bladder retraining

                            “The art of healing comes from nature, not from the physician. Therefore the physician must start from nature, with an open mind.”~ Philipus Aureolus Parcelcus

                            Comment


                            • #15
                              I am being treated for IC by my GYN.....he diagnosed me with Potassium Sensitivity test as well as my answers to his questions about frequency,pain
                              etc.The diet is very important in the beginning to calm the bladder and Urethra down. The Elmiron began to coat my bladder and I was able to add back in many of the foods that used to cause me problems. I too went to URO first and he diagnosed me with OA and tried me on 4 meds that did not work and just about told me it was all in my head,etc.I went to the GYN on my own.
                              Remember that the urinary system in women is so intertwined with our reproductive organs and our hormones play a part too.
                              If the diet helps,stick with it.It's not that bad. I wish you luck,Jo

                              Comment

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