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A new on-line patient survey opportunity!

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  • A new on-line patient survey opportunity!

    I just received a request from UCLA asking if we would promote this new web based study! I think it sounds very interesting and will help us understand, better, the potential impact of complementary & alternative medicines. They are specifically looking for IC patients to participate. I hope you'll consider it!

    Here's a bit more info.. but to participate just go to their website:!

    PROCAIM (People-Reported Outcomes from Complementary, Alternative, and Integrative Medicine) was developed under a grant from the National Center for Complementary and Alternative Medicine to study (1) the effectiveness of the full range of mind/body medical interventions and other complementary and alternative therapies, and (2) the interactions among stress, pain, and responses to the various available treatments. This is a web based study composed of surveys that will occur over a period of time!

    Investigators: UCLA Schools of Public Health and Medicine.*
    Date Added - March 2007
    Status - Open
    Eligible Participants - Patients with IC, fibromyalgia, IBS and other chronic recurring conditions.
    To participate, please visit:
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.

  • #2
    I just signed up & finished part of the survey...I will do anything to help us!!
    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

    I'd like to be on House, MD as a medical mystery.

    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

    Connor & Mommy by the tree:

    Connor with happy!

    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!


    • #3
      Yeah, me too! I just finished the first 15 sections that they gave us.

      Thanks for posting this, Jill! Yoυ always seem to be finding cool stuff for us

      Chronic conditions: IC, bipolar disorder, Lown-Ganong-Levine syndrome, Raynaud's disease, bile reflux, scoliosis
      Current IC treatments: menstrual suppression
      Daily treatments for other conditions: Neurontin, Zyprexa, Cymbalta, Modafinil
      As-needed treatments for other conditions: Klonopin, Ambien


      • #4
        I just finished the survey. I hope it helps.
        TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
        My Helpful Hints for Home Instillation:

        Institute of Female Pelvic Medicine (J. Dell, My MD)
        Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
        I post to encourage and offer total support for rescue instillations.
        Find me on facebook: L. Clark Thomas


        • #5
          I just finished the first survey too. I too am for anything that helps might help us one day. 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's amazing stuff!!:woohoo:


          • #6
            I just took the survey and it only took about a half an hour. Most of the surveys that are there now are only one page some a few more so don't become overwhelmed when you see the 15 surveys.

            Symptoms since '86 starting with frequency(told I had a small bladder)
            Diagnosed with medium IC in 2004 when pain started

            For IC Elavil 50 mg - Atarax 50 mg - Fentanyl 25 Patch replaced every 72 hrs

            For HBP Norvasc 5mg -Diovan 320 mg

            For Depression Wellbutrin XL 300mg

            Sinus Problems Flonase 2x daily-Alegera D when needed

            And Now Fibromyalgia

            Have Tried Elmiron (made me sick and hair loss)
            DMSO and Heparin instills no help
            All and every urgency pill
            Trileptal, Neurontin, Tramdol did nothing
            Cymbalta which made me dizzy and flushed
            Lyrica gave me night terrors each night a different family member died very vivid now I know how they got the name night terrors


            • #7
              I finished the survey, too. Hoping they will learn something that will help all of us.



              • #8
                I didn't get to finish mine. Did half yesterday and went back today to finish the other half and nothing to click on for start. Not unless they are having web site problems.


                • #9
                  I am having the same problems waterflow. I finished half of mine last night, I just went back to log back in and do the rest, but cannot find a users log in...just to sign up????


                  • #10
                    I just found the click on the link to the left. Even if you click on the wrong one, when you log in it will give you the right survey to go into.


                    • #11
                      I did it just now in about 20 minutes. I hope it helps somehow.
                      *IC-- Summer 2004; PFD--October 2005
                      *Fibro--Fall 2000; CFS-- Fall 2000
                      *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                      Total Abdominal Hysterectomy--adenomyosis--9\08

                      04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.