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    I am new to ICN Support. I was diagnosed with IC in March 2004. It has been a roller coaster ever since. I am a second tear teacher, newly married and have a hundred other stresses in my life. I finally thought I had my IC under control when I got my uro to perscribe vstiril (50 mg at bed time) along with my elmiron amost two years ago. In December I started a cycle of flairing. I gained a bit of weight after getting married and have so much school and home related stuff that I have gotten out of doing my pilates like I was.

    I moved from Murfreesboro to Memphis and had to change my uro. When I went in to see him for the first time three weeks ago he diagnosed me with a UTI and perscribed Macrobid. This threw me into the worst flair I have had since being diagnosed. Since then I have felt pretty crappy most days. to make things worse I found a testimonial on a native remedies website for a product called UTI Clear. I had used the stuff before when my doctors though all my IC was was a stubborn UTI with no negative effects that I can remeber. The testimonial said that after 8 days of using the stuff her symptoms were gone. Any way, I started taking the stuff yesterday and am feeling terrible today (in the bathroom every hour at first now it is every 15 minutes and bad bladder pain). I guess I have a few questions:
    1. Has anyone else had experience with UTI Clear- Good or Bad?
    2. Since I seem to have a susueptibility to UTI's does anyone have any suggestions for ways to tell IC flairs from an actual UTI?
    3. Can weight gain actually make IC worse (or atleast increase the number of flairs)
    4. Is pilates a good stress reducer/ exercise for IC?
    5. Has anyone else had a negative reaction,flair wise, to macrobid?

    Any other suggestions would be greatly apperciated. My husband an I have known each other since before I started having urinary problems, we were friends then. I had been diagnosed before we started dating, so he has been there through it all. He is very, very, very supportive, BUT he admittedly does not full understand what it is like to have IC. I hate my new uro (he admitted he had only seen two other cases of IC before and from his blank looks at most of my questions, I got the distinct feeling I knew more about IC than he did) I and am in the search for a new one, but I want to be as proactive with my treatment as possible and I have hit the limit of what I can do alone. Also, even the most dedicated and understanding Urologist doesn't full know what it is like to have IC. I feel badly complaining when I know there are so many more of you who are worse off than I am, but I am really frusterated and it is affecting me. I have really turned much more pestamistic. I want to find the fun, optimistic person I was even a year ago. So I guess this is a long winded SOS to my sisters and brothers in pain.

    Again any help, suggestions etc. Would be greatly apperciated. Also if any of you are in the Shelby/Tipton County Tennessee area and know of a really good urologist who is familiar with IC and takes cigna insurance PLEASE let me know.

    cshell

  • #2
    Sorry you are in so much pain, Maybe your old Uro (The one you liked) would know a Uro, who knows IC, in your new area. Good Luck!
    ~Diane
    dx: Spastic Bladder, chronic hematuria (that went away?), kidney stone... possible IC

    Medical History:
    c-sections: 1988, 1991, 1997
    Viral Arthritis 1998 (Like RA, but went away!! )
    Pterygium & Dry Eyes since 2005
    Hysterectomy (Fibroids) 2006

    ~~~~~~~~~~~~~~~~~~~~~~~~~

    Me & Jerry ~ Sammy & Ryan
    ~~~~~~~~~~~~~~~~~~~~~~~~~

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    • #3
      I am always very leery about treatments that are only supported by testimonials. I would show the container to a physician and ask about it. My suggestion would be to be sure a culture is done to be certain you are on the appropriate antibiotic for the specific infection you have.

      Sometimes it's difficult to know if it's infection or flare.

      Warm healing thoughts,
      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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      • #4
        Cshell,
        to the IC network. You will find a lot of info here. I am sorry you are having such a hard time. I hope that someone can answer your questions. The only one that I can answer is about the Macrobid, my uro put me on it when we were going through the process of ruling out other causes of my symptoms. He wanted me to stay on it for 6 weeks but I was having a miserable time. It def wasn't making me any better and for me it caused a yeast infection which then in turn caused a flare. I ended up going back to see him sooner than 6 weeks because I couldn't stand being on the Macrobid when I knew it wasn't doing any good. I hope you feel better soon.
        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

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