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  • Not doing so well

    In the beginning of January, I noticed my symptoms started rising again so I went in for a bladder hydrodistention and a bladder instillation. That procedure was exactly two weeks ago.. So.. Here I am now, having extremely uncomfortable and frustrating symptoms which are effecting my social life, school life, and overall living..

    I take Elmiron, Ibuprofen, VesiCare, and Hydroxyzine. But throughout my day at school I always have the urges, never feel relieved, and usually it's not a very strong stream..

    Why am I feeling like this? I hate IC.. it's ruining everything in my life. I wish nobody had this stupid disease/condition because it's totally unfair. Who deserves to be stuck on a toilet their whole life?
    Elmiron- 3x a day
    VesiCare- once a day
    Ibuprofen- 2 pills once a day
    Lexapro(liquid)- 4 tbs. once a day


    I'm 18 years old and am living my life to the fullest no matter what obstacles try to stop me. I'm going to college in the fall for Dental Hygiene!!

  • #2
    I don't know how long you've been on Elmiron but it takes 6 months or longer to work.

    I did notice you are taking ibuprofren and it is a trigger for many of us. Is it possible that you might be able to stop taking it for awhile to see if it helps you?

    I agree IC is miserable.

    Comment


    • #3
      I've been on Elmiron for about 2 weeks.. I take it 3 times a day.

      As for ibuprofen, I started taking that every morning over the summer because it helped me get through days.. When I was first put on Elmiron, I stopped taking ibuprofen.. But I had bad period cramps so I took some and I felt suriprisingly relieved of my IC symptoms. However, that feeling only lasted a day. But I think I benefit from ibuprofen as it is an anti inflammatory drug.

      But who really knows? It'd be so much easier if we could look into our bodies and see what's really going on when we eat trigger foods.
      Thanks for the reply.
      Elmiron- 3x a day
      VesiCare- once a day
      Ibuprofen- 2 pills once a day
      Lexapro(liquid)- 4 tbs. once a day


      I'm 18 years old and am living my life to the fullest no matter what obstacles try to stop me. I'm going to college in the fall for Dental Hygiene!!

      Comment


      • #4
        drink lots of water

        I would quit the Ibu and try Aleve. Drink lots of water when ever taking any type of medicine. Water helps the IC bladder so drink lots.

        Comment


        • #5
          Although you might be okay with ibuprofren and Aleve, I would advise caution with both. They both have the potential to cause problems.

          I believe I have read that some of us are okay with anti-inflammatory drugs and some of us can't take them.

          If I am wrong about the above information, please feel free to chime in and correct me. I am by no means as knowledgeable as many on here.

          Comment


          • #6
            I mean, I feel the ibuprofen actually helps me. Without it, I feel like 'naked' cause it just reduces the frequency and urge. But it doesn't last me the whole day.
            Elmiron- 3x a day
            VesiCare- once a day
            Ibuprofen- 2 pills once a day
            Lexapro(liquid)- 4 tbs. once a day


            I'm 18 years old and am living my life to the fullest no matter what obstacles try to stop me. I'm going to college in the fall for Dental Hygiene!!

            Comment


            • #7
              Sorry

              Originally posted by irfran View Post
              I don't know how long you've been on Elmiron but it takes 6 months or longer to work.

              I did notice you are taking ibuprofren and it is a trigger for many of us. Is it possible that you might be able to stop taking it for awhile to see if it helps you?

              I agree IC is miserable.
              I agree with irfran, and I was going to say just what ChrisNes said. Aleve is also an NSAID, and because Ibuprofen tends to be so problematic, I would try and switch. And yes, the minimum amount of time it takes Elmiron to be effective is 6 months. So you kind of just have to wait it out, and see if it works because you have to try the less invasive and less dangerous treatments first. Stick with the Elmiron; you could really benefit from it. Also, it can take up to two months to recover from a cysto and hydro; it usually takes me two weeks. What did you have instilled?

              I am sorry this is happening to you. And I know, this is interfering with everything in your life, but you cannot keep thinking this is unfair because it will drive you bananas. No, you do not deserve to suffer like this, but you have to look at IC in a positive way. IC is a gift. It will make you tougher and more appreciative. It is not a punishment. IC is your opportunity to become stronger. You can be a victim, or you can take this opportunity and become stronger! And IC patients are the toughest people I know! Hold you head up, and stay strong, girl!
              Tierney
              Message me and add me http://facebook.com/tierneybrielle.

              Diagnosed with IC at 12-years-old, but have had IC much longer, now 24-years-old - fibromyalgia (diasnosed 07/30/12) - CFS - migraines - diagnosed with myofascial pelvic pain syndrome in January of '12 - scoliosis since ~12-years-old & s/p spinal fusion (06/21/10) T10-L3 w/ metal implants & nerve damage - post laminectomy syndrome - lumbar spondylosis - mild dextroscoliosis now - menorrhagia and dysmenorrhea (both controlled) - IBS - chemical sensitivity - allergies - chronic nose bleeds - heartburn - rosacea - and that is just the relevant stuff

              Do you have a question? Feel free to ask me anything; I am an open book!

              I am not a medical authority; I do not offer medical advice. Talk to your doctor, and if you are not comfortable talking to your doctor, find another one. It is OK to advocate for yourself as well as not be satisfied with your doctor! You deserve the best medical care.

              Comment


              • #8
                Thank you so much.. Truly. You're the kind of person who inspires me and can change my outlook on this whole thing. I really appreciate it.

                Perhaps I'll try aleve... And give the Elmiron more time.

                For my bladder instillation I apparently had heparin, lidocaine, sodium bicarbonate, and some other fancy word I cannot remember.
                Elmiron- 3x a day
                VesiCare- once a day
                Ibuprofen- 2 pills once a day
                Lexapro(liquid)- 4 tbs. once a day


                I'm 18 years old and am living my life to the fullest no matter what obstacles try to stop me. I'm going to college in the fall for Dental Hygiene!!

                Comment


                • #9
                  I hope you get some relief soon.

                  Hang In There
                  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


                  • #10
                    Originally posted by cocoanemo11 View Post
                    Thank you so much.. Truly. You're the kind of person who inspires me and can change my outlook on this whole thing. I really appreciate it.

                    Perhaps I'll try aleve... And give the Elmiron more time.

                    For my bladder instillation I apparently had heparin, lidocaine, sodium bicarbonate, and some other fancy word I cannot remember.
                    Ha no problem! And thank you. I have to give myself that pep talk every once in a while too.

                    Hmm...I have never had sodium bicarbonate, and I might of had lidocaine. I have had heparin instilled though! Just curious. I hope you gets you some relief from the instillation sometime soon. Don't be afraid. Good things do happen!
                    Tierney
                    Message me and add me http://facebook.com/tierneybrielle.

                    Diagnosed with IC at 12-years-old, but have had IC much longer, now 24-years-old - fibromyalgia (diasnosed 07/30/12) - CFS - migraines - diagnosed with myofascial pelvic pain syndrome in January of '12 - scoliosis since ~12-years-old & s/p spinal fusion (06/21/10) T10-L3 w/ metal implants & nerve damage - post laminectomy syndrome - lumbar spondylosis - mild dextroscoliosis now - menorrhagia and dysmenorrhea (both controlled) - IBS - chemical sensitivity - allergies - chronic nose bleeds - heartburn - rosacea - and that is just the relevant stuff

                    Do you have a question? Feel free to ask me anything; I am an open book!

                    I am not a medical authority; I do not offer medical advice. Talk to your doctor, and if you are not comfortable talking to your doctor, find another one. It is OK to advocate for yourself as well as not be satisfied with your doctor! You deserve the best medical care.

                    Comment

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