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wHAT PERCENTAGE OF THE TIME DO PEOPLE WITH IC FEEL GOOD?

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  • wHAT PERCENTAGE OF THE TIME DO PEOPLE WITH IC FEEL GOOD?

    I know everyone is different, but I was wondering if some of you all who have had or been diagnosed with IC for a while, what what percentage of the time do you feel good? Do you go through several days without symptoms and then go through a few bad days(that is what seems to be happening to me). Do you have more good days than bad?
    I haven't been diagnosed, but my doc and I seem to be convinced I have it and reading the message board shows me I have a lot in common with everyone!
    Thanks and I hope you all have more good days than not so great days!!

  • #2
    For the past few years I have basically been symptom free. I eat what I'd like, drink what I'd like, and pretty much do whatever I'd like activity-wise. I cannot remember the last time I flared.

    In the beginning, the first year or two, I almost always felt my symptoms. I seldom got relief and if I did it was short lived.
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

    Comment


    • #3
      HI I have more good days than bad. My bad days come when my dr.s try new meds for other illnesses I have.....then that will cause bladder pain......or urethra pain. But most days are good for me. Hope you will get to that point too! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #4
        I feel pretty good most of the time. I wear jeans, do yoga, work out at the gym, hike, work fulltime, attend church, spend time with friends - none of which was even possible in the beginning & which was then not easy for awhile while I was getting my treatment program figured out. Now that I know my dietary triggers & have found treatments that work, most of my days are pretty good, and my flares are manageable.
        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!

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        • #5
          I have maybe 5 days out of the year when I feel good and they are not at the same time.

          Comment


          • #6
            I feel good most days. Yes, I have pain, but I can deal with it. (I just got out of a VERY NASTY FLARE-SO BAD that my husband wanted to take me to the ER in a very bad rain storm!!--He was so worried ( we compromised I went to the doctors the next day)- I don't think he ever seen me like that before) But like I said most days I do ok, I'm not overly diet sensitive, I take my medications, I have raised 2 kids from the time they were babies, worked full time (don't think I missed a days of work due to this-- except doctors appointments and even that it was a few hours here and there).

            Comment


            • #7
              My first year I was in a constant, intense, painful flare. I hurt bad all the time. After I got dxd and treatment, I had many days of mild pain, easily managed with my pain meds, and eventually many more days pain free with no symptoms. That's how it was for a couple of years, but I've been in a bad flare for over 2 months now, it's not fun, but I know it will end so even though it's tough right now, I'm just trusting that it will end soon and I will get back to a more manageable level like before.

              Comment


              • #8
                I feel very good. I am able to do anything I want to do. Every once in a while, I have a burning in my bladder, but I have learned what to do when that happens and it usually goes away in a couple of hours. If not, it is always better by the next morning.
                Sharon

                Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                Where I can be found most days.



                Link to the ICN Patient Handbook:
                http://www.ic-network.com/handbook/

                Link to the IC Diet:
                http://www.ic-network.com/diet/


                IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                Comment


                • #9
                  I feel it constantly. I just had a fluke and had 2 days this last week where I felt like my old self had energy, felt great! i hope for more like that!
                  I may have a rare day here and there but for the most part I have pain daily. My pain has also increased from when this all started: july 2002. my 5 yr anniversary is coming up!
                  mom to 3 wonderful kids


                  IC symptoms 7/03,
                  hysterectomy 11/04,
                  prolapse cervix 7/07
                  diagnosed: IC 2007
                  IBS 2008

                  Comment


                  • #10
                    This is my third year following my diagnosis and I feel good 90% of the time. I have figured out my triggers and live my life according to these factors. I started my exercise program again about six months ago - walking instead of running. I eat pretty much what I like but still stay away from most cereals ( rice krispies - big trigger ) and tomatoes. The first year was constant pain and urgency. Now if I do flare, my symptom is mostly pain in my bladder region and down my legs and it usually lasts a few hours. There is life after diagnosis!

                    Comment


                    • #11
                      I think I've had this so long now that I missed my opportunity to treat this effectively. I never feel good and am feeling worse than ever in fact. I'm in severe pain, sleeping all day, none at night, and not eating right. Now I'm possibly going to be diagnosed with Diabetes. So I can't imagine I'm going to feel good anytime soon.
                      http://www.TheCraftyEwe.etsy.com

                      Comment


                      • #12
                        I have some slight discomfort most of the time, but basically I feel well enough to be happy. I occasionally have pretty bad flares, but if I stick with my diet I do okay.

                        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

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                        • #13
                          MSM Gel

                          [What is MSM Gel? I need something .

                          Comment


                          • #14
                            For two years, I suffered excrutiating pain. I would lie on the sofa at night and cry after the rest of my family had gone to bed, because I could not get relief from my flares, no matter what I did. My family didn't understand what I was going through, and the only source of comfort I got was from my cat, who would sit on my lap as if she could sense that is where I felt the most pain. I was devastated when she died last year.

                            I have been symptom-free for about six months now. You can read more at my thread entitled "I have beaten IC...for now". I gave it that title because there is no cure for IC. We can have good days and bad days. Lately, all of my days have been good!

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                            • #15
                              MOONHEART, I am so sorry you feel so badly. I am praying for you. no one should suffer like that.
                              Take care and hugs to you! I hope you feel better!

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