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  • New to Ic

    Can someone please tell me the details of IC? I was just recently diagnosed with IC and was wondering if someone could explain IC to me.


    Thanks

  • #2
    Hello Tem

    Look around, go back to the home page and you will get more info.

    Google it. Hope you don't have it, but if you do, don't freak out. The first step is to watch your diet. Look on the diet on this site and see if there is something that is irritating your bladder. Don't self diagnose yourself. It could be a lot of things. Get tested for infection. See a doc or go to a clinic. There are a lot of bladder/kidney/abdominal issues, it may not be IC. Let us know how you make out. Jill, wife of Bob

    Comment


    • #3
      Did your Dr give you any info on IC? We can answer your questions but to start it would be best to go to the ICN homepage, find the link at the top right of this page. Go to the patient section and you will find lots of info. YOu can also go to IChelp.org which is the ICA, they also have tons of info to get you on your way to understanding IC. There is no cure at this moment and they don't know what causes IC, however there is treatment that can ease your symptoms. If you google Elmiron you will find some more good information about that medication. Most ICers start out trying that to see if it can help them.

      My advice to you would be to read up on IC from these pages above and then come here and ask any questions you really aren't sure about. We are always here for support. We are not medical authorities though, keep that in mind. We are other people living with IC trying to help each other out with suggestions.

      Welcome to our group! Ask any questions you would like anytime, there is usually someone on here at all times.

      Sandra


      Originally posted by temari67 View Post
      Can someone please tell me the details of IC? I was just recently diagnosed with IC and was wondering if someone could explain IC to me.


      Thanks
      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


      • #4
        I just noticed you were in the teen section. You must be scared about this. Please go to the pages I suggested. It will help you get a good grasp of what is going on with your body. I am so sorry that you have to deal with a chronic illness at such a young age. What medications did your Dr start you on? What are your symptoms? It is very important to watch what you eat and drink, first off, no more soft drinks. I know that isn't easy unless you are one of those teens that is very health oriented! There will probably be tons of questions you will want anwered. We do have some younger people here,not sure how many teens, but I am sure there are others that were diagnosed in their teens.

        Hopefully some of them will see this and let you know who they are.

        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
          If you click on the Patient help link in my signature below, you'll find the information you want. There's a link to "What is IC?" that should help answer your questions.

          Sending warm welcoming 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
            Hi Temari

            I just wanted to say to the club you probably don't want to be a member of!! I'm SO sorry that you're having to deal with this so young. Nobody ever WANTS to have IC but I can only imagine that it's harder at your age. Does your mom go to appts with you? Because even at my age, I sometimes feel better having someone there to hear what's being said. When I'm at the doctor I usually forget all the questions I wanted to ask so it helps to write them down and give them to the person who's with me. That way when I flip out over something that's been said, my husband can be there to reel me in and get the topic back on the questions I had to begin with. I hope you have LOTS of support in your eyeball to eyeball life, and I hope you will learn that you will always get support here!! I'm hoping that since they've found it while you're young, that a good treatment program will be right around the corner for you!! Let me know if I can help you!!!
            Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
            Lexapro-20 mg
            Aciphex
            Ambien-as needed
            Percocet-7.5 up to 3 per day as needed
            Valium-10 mg x2 per day
            Phenergan-1 at night
            Prelief w/everything
            Now recovering from acute pancreatitis

            Currents treatments that help somewhat:
            Heating pad
            Hot baths
            Ice
            Being VERY still while lying down with legs elevated

            Comment


            • #7
              Hi Temari67 I am also sorry to welcome you into the IC club. I think the best place to start with questions about IC is your doctor. I second KatieB's suggestion that taking a supporter with you to help you ask questions. I became sick when I was 18 and I have taken my mom to every appoint with me (I am now 21). She is extremely helpful because I find doctor's appointments to be very stressful even with a doctor I adore. She is able to ask questions and remain calm.

              In addition, I agree with everything said about this site being helpful. It breaks down all current knowledge about IC and gives great suggestions about how to help yourself through diet and other techniques.

              Comment

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