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My Bladder Is Driving Me Crazy

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  • My Bladder Is Driving Me Crazy



    (Anyone who doubts how difficult an IC flare can be should just read this post. Wow! It described my IC flares perfectly and the frustration that we've all felt at any one time. Remember, flares are often the result of a direct irritation to the bladder... by foods, by hormones, etc. A flare can also be the result of a pelvic floor spasm. I had whoppers after driving. So, be a detective and try to determine what could have contributed to this flare. Most of all, calm and soothe your bladder! No coffees or sodas please! - Jill O.)

    Today is Day #5 of my latest horrible, ridiculous flare. Monday I went to the uro and the inital test showed no infection present. I just got the results back on the culture. Same @%#$! thing, no infection found. The burning has been really bad today after a slight decrease yesterday. I feel like I am just spinning my wheels taking all these meds and I still have to keep dealing with these awful flares. I worked from home Monday after my appt with my uro. I worked all day at the office Tuesday but I called in sick the last 2 days( no working at all) to see if complete rest would help. I felt a little improvement last night but today I feel as lousy as ever My bladder feels like it is being slashed with razor blades and I am peeing every 15-20 minutes most of the time it's only a few dribblescoming out I can't ever seem to completely empty my bladder. I am sooooooo frustrated. It may be my hunner's coming back. I just don't know. I desperately need to find some kind of permanent relief from this debillitating disease. I am looking into to trying Cytotec but I am worried about the side effects. I sure wish somone could find a cure for this crazy mess so none of us would have to go through all this crap. I am sick and tired of being sick and tired.
    Last edited by icnmgrjill; 03-08-2007, 02:12 PM.
    TexasHoney

    Let's keep praying for a cure.
    IC Symptoms began in early 2001
    Divorced : Sept 2002 (Partly due to IC)
    Diagnosed with IC in April 2004
    Most recent injury - Rupurtured Left Achilles Tendon
    Wed Jan 28 2009
    (Ice Storm Accident)
    2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
    Other Injuries
    Broken Left Ankle - July 2004 ( fell off ladder)
    Broken Left Ankle (Again) - May 2005 (car accident)
    Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

    CURRENT MEDS
    Elmiron, Pyridium

  • #2
    I feel ya! I hate those flares that seem to last for days at a time w/ no rhyme of reason for them. I've been battling some sort of infection now for two weeks and its starting to really get me down. When I flare I try to just take it easy and wait it out-hoping it'll calm down by the next day..but then by the 3-4th day I just can't take it anymore!!!!! Everytime I have a flare it sets me back. I just had a great 4mo remission and all its taking is this 2wks to start to make me feel down again. I hate this!!!!!!!!

    Comment


    • #3
      I am sorry that you are feeling so bad. Please take care and feel better soon!

      Comment


      • #4
        When that happens, what works best for me is heparin-lidocaine instillations. We can do them at home now (a lot of doctors will set patients up to do them), and we do them regularly twice a week. But when a BAD flare like the one you're having hits, we do them twice a day. So far, it's headed off two that I thought were going to last and be bad.

        Do you do instillations? If not, you should look into it.
        Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
        Wishing you happiness and good health, and all the best out of life.

        Peace, Carolyn
        ___________________________________________________

        Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


        On the Beach with IC

        Comment


        • #5
          Just to follow up with what Carolyn has said. Rescue instillations can be very helpful in stopping flares in their tracks. Definitely worth considering and/or learning more about. We have a chapter on rescue instills in our patient handbook! http://www.ic-network.com/handbook/

          Jill
          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. http://www.icnsales.com/icn-personal-coaching/

          Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: 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.






          Comment


          • #6
            I am so sorry you are flairing.. I am in the same boat. I went to the uro too and told him I have been in unbeliveable pain since Jan 11th.. I can't sit with my legs down because the pain is so bad..
            sending you big hugs and hoping you feel better soon.
            'The will of God will never take you where the Grace of God will not protect you.'

            Comment


            • #7
              I wish I could be there to just sit with you and talk for a while.

              Sending gentle cyber hugs,
              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

              Comment


              • #8
                Thanks Gals, I love each and every one of you!

                Hello, Everyone.

                I just want to say thanks for your replies and concern. I can hardly begin to say how much I appreciate the support and understanding I get through communicating with y'all on these boards. I don't what I would do without it. Jill, thanks for the courage award, although I am not sure I really deserve it due to all the complaining I do in my posts.

                To answer Carolyn's question: I have been doing Heparin/Lidocaine instills at home on and off for about the last year and a half, somtimes as much as 2-3 times a week but not consistently. It seems to me sometimes they help and somtimes they don't. I rarely drink the sodas anymore. Maybe 2 or 3 a week at the most. I have probably drank no more than 5 cups of coffee in the last month or so. I drink as much water as I can. I am watching what I eat fairly well. Dealing with IC has been the most difficult thing I have ever dealt with in my whole life. I am probably going to try Cytoec next. Maybe one of these days I will find something that will give me some long lasting relief. I keep hoping and praying for a cure but I know that may still be a long ways down the road. This disease has taken so much from me but I determined to beat it one way or another. Once again I want say how much I appreciate everyone's support, advice and concern. I don't know what I would without you gals. My family and friends for the most part try to understand but as I and many of you have stated," Only a fellow ICer can truly understand what we go through in dealing with this horrible disease."
                Let's all keep praying for a cure.

                TexasHoney
                Love Y'all
                Last edited by TexasHoney; 03-08-2007, 07:38 PM.
                TexasHoney

                Let's keep praying for a cure.
                IC Symptoms began in early 2001
                Divorced : Sept 2002 (Partly due to IC)
                Diagnosed with IC in April 2004
                Most recent injury - Rupurtured Left Achilles Tendon
                Wed Jan 28 2009
                (Ice Storm Accident)
                2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
                Other Injuries
                Broken Left Ankle - July 2004 ( fell off ladder)
                Broken Left Ankle (Again) - May 2005 (car accident)
                Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

                CURRENT MEDS
                Elmiron, Pyridium

                Comment

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