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Newly diagnosed. Need advice/feedback

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  • Newly diagnosed. Need advice/feedback

    Hi. I'm new here. I was just definitively diagnosed Feb 2nd after a Cystoscopy with Hydrodistention confirmed that I had IC. My symptoms started in 11/10 though. I thought I had a simple UTI. Boy was I wrong.

    My current treatments for IC as of right now are oxybutinin nightly for bladder spasms. Pyridium as needed. I am also on my 2nd week of bladder cocktain II. The good news is I still have full bladder capacity.

    My questions as a newly diagnosed person is this; how many of you have other medical problems on top of this? I was diagnosed with Crohn's disease in July 08. I was diagnosed with Lymphocytic Colitis in March 10. I also have multiple arthtopathy and muscle pain r/t Crohn's.

    I can't help but feel that they are all related somehow. My Crohn's has been under control for a year now but is now becoming active again due to IC. I'm struggling to get them both under control. It was hard enough having a Chronic bowel disease to deal with but now a Chronic bladder disease too is a lot for me to wrap my head around.

    Any thoughts or comments are greatly appreciated.

  • #2
    Hi, welcome to the board!

    Sorry that you have so much going on.
    I am not sure about crohn's but IC is associated with a few that I know of: IBS, fibromyalgia, vulvodynia, sjogren's syndrome. There is a section towards the bottom of the board about related conditions.

    There are some other meds alot of ICers take if you do not get relief from the instillations. I hope they go well for you.

    The diet is good to follow, there are some common foods and drinks that irritate our allready irritated bladder. I have a link below.

    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link:
    AUA 2011 Guidelines to diagnosing and treating IC overview-
    AUA 2011 Guidelines to diagnosing and treating IC PDF:
    Great treatment flowchart on page 19 of the pdf


    • #3
      sorry to here you have numerous illnesses, me too. i hope the cocktails work for you they do for me so far.
      <a href=";current=Picture005.jpg" target="_blank"><img src="" border="0" alt="Photobucket" ></a>