Interstitis Cystitis anyone ??

Discussion in 'Chit Chat' started by susabar, Mar 11, 2008.

  1. susabar

    susabar New Member

    My 14 year old daughter was just diagnosed... She saw Dr. Kristene Whitmore who is the nation's leading expert. The bad part is , it's just her and me and I have fibromyaglia .. and must work full time to do it all !!

    Any hope, comments you could give would be appreciated

    L, Susabar
  2. joyfully

    joyfully New Member

    Yep. I've had that one too. Knock on wood, I haven't had it for a decade or two. (thank God)

    What worked for me? They catherized me and poured DMSO with some steroid into my bladder. I would have to lay there about 15 or 20 minutes. I think it would take 6 or 7 treatments to get over one bout of the IC.

    It takes about 5 seconds after they pour the DMSO into the bladder before your mouth tastes like garlicky sour milk. You smell like it too for days. You breath wreaks of this smell with every time you exhale. BUT, it works. I have to be careful of citrus and certain medications.

    I'd make sure the doctor knows you are a single mom. Maybe the doctor will cut her costs. maybe she gets some free samples of DMSO from the pharmaceutical reps.??????

    I don't know, but it certainly doesn't hurt to ask.

    I don't know if there is another treatment now. That was the only one that worked for me.

    OOPS! I went back and made a correction. In one sentence, I wrote uterus instead of bladder! YIPES! I corrected it now. It was late at night when I wrote the original post. Sorry.[This Message was Edited on 03/12/2008]
  3. Waynesrhythm

    Waynesrhythm Member

    Hi Susabar,

    The following was written by Andrea Nichols which I copied from her website. Hope this may help some.

    This <a href="">link</a> will take you to some book reviews of the book mentioned below.

    Regards, Wayne

    "Along the Healing Path - Recovering from Interstitial Cystitis"

    This excellent book, written by Catherine M. Simone, is a must read for anyone with Interstitial Cystitis.

    I can honestly say, if it weren't for this book I would not be in the place I am today, which is completely symptom-free.

    Catherine Simone had a very severe case of IC, which she healed using the methods described in her book. I used a lot of her suggestions, which are all based on the natural healing approach.

    "Along The Healing Path" is a holistic perpective of Interstitial Cystitis with information on various alternative treatments, herbs, and natural products in relation to healing from IC. "Along The Healing Path" offers very helpful tips and vital information for IC sufferers “from one IC patient to another…”

    Interstitial Cystitis, or "Painful Bladder Syndrome", typically appears when your immunity has been compromised. The space between the bladder lining and the bladder muscle becomes chronically inflamed, leading to pain, sometimes severe. Cracks in the bladder wall allow urine to irritate bladder tissue, leading to a breakdown in the lining of the bladder.

    Pain in the bladder that intensifies as it fills and then goes away upon voiding, only to immediately return again;
    breakdown of the bladder tissue, even when infection is not present;
    extreme frequency of urination, often every few minutes;
    blood in the urine;
    digestive problems;
    low grade fever;
    recurrent vaginal yeast infections;
    joint pain and swollen glands;
    thyroid problems;
    severe food allergies which trigger bladder pain
    [This Message was Edited on 03/12/2008]
  4. Sandyz

    Sandyz New Member

    I am sorry to hear your daughter has IC. I have it too and its difficult to live with. Their are some posts about it on the FM board. There are also lot of support boards on the internet for it.

    Tell her to hang in there, there are many thing you can do to manage it. One tip is drinking one-fourth a teaspoon of baking soda in glass of water for a quick fix for pain. IT alkalized the bladder within a half an hour relieving a lot of pain. Also I use the Prelief tablets a lot. They take alot of acid out of food. They allow me to eat alot more kinds of food. My diet is fairly normal now. If I have a bad flare then I go back on the IC diet tell it lets up.

    Hugs to you both,
  5. Bluebottle

    Bluebottle New Member

    There is a wonderful informative forum run by nurses called 'Interstitial Cystitis Network'. They also sell 'can't wait' cards for public restroom queues.

    I try to control mine with a low acid diet,Prelief tablets & slow release Oxybutynin tablets. Other treatments include various instills, Botox injections, Elmiron, Desert Harvest aloe vera etc.

    Some doctors stretch the patients bladders - this made my IC much worse & I believe it is a barbaric thing to do to an already inflamed bladder.

    The diet excludes tomatoes,caffeine, sodas (I only drink still water at room temperature), chocolate, spices, citrus, sweeteners, preserved meat, caffeine etc. Most fruits area problem -I can eat pears.If you can't afford Prelief, you could try her with Tums at mealtimes, but the sugar may be a problem.

    She is so very young to have this horrible condition, please give her a hug from me.It sounds as if you could do with one too!

    (Baking soda is dangerous for those with high blood pressure or heart problems.)
    [This Message was Edited on 03/16/2008]