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um, what is a flare?

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  • #1

    um, what is a flare?

    Ok... so this may sound like a dumb question... but im new to this
    My really only symptoms right now are urethral burning... I dont happen to have frequency issues currently. Sometimes I have an urgency concern, like if im shopping or something, it will strike me and i will get sweaty and panicky. But mainly i have urethral burning, sometimes when i urinate, sometimes when i dont.
    I have been trying the IC diet, avoiding acid foods, and chocolate (im not too happy about that). Sometimes after I eat, i still get burning in my urethral area. I was wondering, is this a flare? It passes, if i drink a big glass of water, or in time it just seems to go away...
    I also have some bloating in my abdmonen... feels as though im gassy, but im not.
    I have been reading the site, and i have noticed that people flare for months... so im confused as to whether or not what is happening to me would be a flare?
    Also wondering if anyone else out there seems to have this mild version of IC, or whether i have been misdiagnosed? I had a cysto, and following my uro told me i had IC. But no more info than that, other than try the diet and im on Macrobid, as he found some inflammation.


    "Its a troublesome world all the people who're in it
    Are troubled with troubles, almost every minute
    Just tell yourself Duckie, you're really quite lucky
    Some people are much more, oh muchly much more
    unlucky than you!" Dr. Seuss



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  • #2
    Some people have differant symtoms of flaring...
    It could be from very mild to severe pain...

    When most say flare it involves: Burning, Pain, Swelling, Frequency,and Severe urge feeling.
    I would say that is a severe flare for me..

    But sometimes it can be mild with just frequency and burning...
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


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

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.


    ICN 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

    • #3
      A flare is usually when your symptoms get worse. If someone says that they have been flaring for months, it's probably because their symptoms had been more under control and then something set their symptoms off and they got worse. I personally have pain most days but a flare for me is much more pain, more frequency more burning and just generally feeling crappy. When I was first diagnoised though I felt like I was in a big flare, symptoms were bad all of the time. Once you start getting treatment and feeling better you'll know baseline symptoms vs flares.
      Christine



      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus

      Comment

      • #4
        HI! If you dr. told you that you have IC.....and start the diet and nothing more....I'd say you need to find another URO who knows how to treat IC patients....it sounds like that dr. doesn't know what to do for you other than tell you to start the diet. It's best if you can find a dr. who is an IC specialist. I looked up URO's in the phone book.....and went dr. the list calling each one and asking if they specialize in IC. Luckily I found a good one and I love him! I hope you are able to find a good dr. who helps you with the IC.
        It sounds like you are having a mild flare...it can get worse......so find a good dr. before then! 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

        • #5
          Thanks everyone... this site is such a godsend!


          "Its a troublesome world all the people who're in it
          Are troubled with troubles, almost every minute
          Just tell yourself Duckie, you're really quite lucky
          Some people are much more, oh muchly much more
          unlucky than you!" Dr. Seuss



          Comment

          • #6
            Hi Jube. I love your Dr. Seuss quote. I also was told, following my cystoscopy, that I have mild inflamation near the base of my bladder. I was wondering how much Macrobid your doctor wants you to take and for how long. I am curious because I might ask my doctor if I should give antibiotics a try. I think it would be a long shot for me but it might be worth a try. Thanks. Linda
            Sudden onset of UTI like symtoms on Dec 27, 2006.
            Diagnosed with IC on March 12, 2007.
            Current Meds: 50mg Elavil
            "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

            Comment

            • #7
              Hi Linda...
              My doc prescribed me a month's worth of Macrobid right after my cysto. He prescribed 100mg 2 x per day, with meals. So far, I honestly havent noticed much difference. As my main symptom is burning in the urethra, my doc thought this might help ease the inflammation (which he felt has been a low grade infection) and hopefully would make a difference to my IC symptoms. But at this point, I think my burning is diet sensitive, as I have been noticing it while trying the IC diet.
              Ask your doc about it, and let me know what he/she thinks... i am curious, as I am newly diagnosed, and not sure if my doc is going about things the right way, or if i should be looking for someone new?
              Thanks so much... take care


              "Its a troublesome world all the people who're in it
              Are troubled with troubles, almost every minute
              Just tell yourself Duckie, you're really quite lucky
              Some people are much more, oh muchly much more
              unlucky than you!" Dr. Seuss



              Comment

              • #8
                jube - thanks so much for the information. I will let you know if I talk to my uro. My uro treated me with antibiotics for a couple of months before he sent me to an IC specialist. The IC specialist said that he did not think I should continue antibiotics since I have no bacteria. But I am having a hard time giving up on antibiotics since my symptoms started so suddenly and very much like a UTI. It is hard to give up on antibiotics because they were my only hope for a quick cure. I am taking Elavil now and feeling a bit better but I want to be 100%. I hope that you are feeling better soon and I am keeping you in my thoughts. Linda
                Sudden onset of UTI like symtoms on Dec 27, 2006.
                Diagnosed with IC on March 12, 2007.
                Current Meds: 50mg Elavil
                "Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown

                Comment

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