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  • I'm doing great!

    Hello everyone!

    Sorry about no thread after my procedure. Better late than never right! The procedure has been a miracle! I'm now down to >8 times a day and 1 time at night. It is a complete success! My interstim II implant is may 25th bright and early. I am healing beautifully and not really any pain to speak of. The reason I wasn't posting is because I have been battaling severe nausea/vomiting/diahreaha(sp) from the anti's. They have since changed me to different anti's and gave me phenegan and I'm doing great! This was the best thing I have ever done for myself in my life. Feel free to ask any questions! I am getting back to work so I am playing katch-up so I was breif! I missed taking with you guys!

    Warmest regards from Maine!

    Erika
    IC diagnosed officially via cysto/urodynamics 1/26/07

    Grade II Endometriosis diagnosed via lap 12/11/07

    "Fall down seven times, Stand up eight."

    "Life is a tragedy for those who feel and a comedy for those who think."

    Current Treatments:
    Interstim Since 5/25/07!
    Birth Control

  • #2
    Erkia
    How WONDERFUL :woohoo: :woohoo: :woohoo: I am so happy that this has helped you so very much.
    Sorry the antibiotics got you sick I have been waiting and waiting for you to post, and see how things went.

    sending you big hugs
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      Erika
      I'm so happy to hear the you're having such great results! Sorry that you got sick from your antibiotics but at least they changed the meds for you so that you could feel better.
      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

      Comment


      • #4
        That is wonderful! :woohoo: :woohoo:

        Comment


        • #5
          Oh Erika...That is such good news!!!!!
          Sharon

          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

          Where I can be found most days.



          Link to the ICN Patient Handbook:
          http://www.ic-network.com/handbook/

          Link to the IC Diet:
          http://www.ic-network.com/diet/


          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Comment


          • #6
            I'm so glad its helping!!! Keep feeling better!

            Comment


            • #7
              :woohoo: :woohoo: :woohoo:

              Comment


              • #8
                That is just great Erkia !!!

                I am just so happy for you...
                Yea , I had a very hard time as well and not looking forward for it after my surgery either ..

                Just take is easy and enjoy not having to live in the bathroom any more...

                Hugs; Debbie
                Thinking positive has got me through to another day!!

                Comment


                • #9
                  :woohoo: I am so happy for you! I am so glad that it is working well for you and you are feeling better!

                  Comment


                  • #10
                    I'm glad you posted how you were doing. I've been wondering. It's great to hear such happy results. I hope I feel the same next week. Thanks for the inspiration!

                    Comment


                    • #11
                      hello!

                      I have been meaning to post a picture, but I havent gotten to it yet, ill work on that. In terms of the trial, it has been somewhat easy. THe dressing and meds have been my only problems. I have skin pain today, as the tape/dressings they put on me are causing open sores on my back. It is gross and it bleeds. The staples are also starting to get red around the area so I started cleaning it with alcohol, and puting antiseptic cream on it too. I can't wait to have dressings off. Besides that, i'm doing great! The pain is totally worth the 95% improvement i'm getting. The doctor thinks it can be programmed so I get complete releif!:woohoo: I'm still waiting to hear back from my rep to try programming it a touch differently. THanks guys for the encouragement!

                      Erika
                      IC diagnosed officially via cysto/urodynamics 1/26/07

                      Grade II Endometriosis diagnosed via lap 12/11/07

                      "Fall down seven times, Stand up eight."

                      "Life is a tragedy for those who feel and a comedy for those who think."

                      Current Treatments:
                      Interstim Since 5/25/07!
                      Birth Control

                      Comment


                      • #12
                        What good news !!

                        :woohoo: Erika !!
                        I am so pleased everything is working well.
                        Talking about dressings causing irritation to the skin, I am allergic to plasters so I have to use dressings for sensitive skin.
                        Every time I cath I use a fresh one and that can be up to 20-30 times a day at the moment.
                        The problem is that they are very sticky at times and pull on my mitrofanoff and the skin area around it, sometimes the skin is so red it bleeds.
                        I have the square shape of the dressings around my belly button.
                        I also find that my skin is very dry too.

                        Look after yourself xxx
                        I have had IC and PBS for 20+ years.
                        Tried every medication I can think off.
                        Had a Clam Cystoplasty with Mitrofanoff in November 2006.
                        Had a Total Cystectomy, with a neobladder, Urethradectomy and Mitrofanoff review, also had a peristomal hernia repaired.
                        4th october 2007.

                        Check out my profile on www.myspace.com/surreychick.
                        if you want to know more about me.

                        Comment


                        • #13
                          Thats so great its working for you...
                          Hugs
                          Ronda

                          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                          Link to Patient Handbook:
                          http://www.ic-network.com/handbook/

                          Diet Reference Sheet:
                          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                          Meds I have Tried:
                          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                          Lexapro< Bad reaction to this med!
                          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                          Dx With IC in Nov 2006 with Hydro/Cysto
                          Hydro/Cysto Caused Bladder to Rupture.

                          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                          ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                          Comment


                          • #14
                            yeah so i'm allergic to bactrim now

                            Took one 10 minutes ago. Have hives all OVER! hahaha doctor told me to take 50mgs of benadryl, then nighty nighty. HAHA, wow this is why i'm getting the stim. My body and skin are just so sensitive hahaha

                            Erika
                            IC diagnosed officially via cysto/urodynamics 1/26/07

                            Grade II Endometriosis diagnosed via lap 12/11/07

                            "Fall down seven times, Stand up eight."

                            "Life is a tragedy for those who feel and a comedy for those who think."

                            Current Treatments:
                            Interstim Since 5/25/07!
                            Birth Control

                            Comment


                            • #15
                              YEAH!!!! :congradulations: that's so great to hear! I'm glad your doing well. Keep us posted!

                              Hugs
                              Rachel
                              ***Rachel***

                              Dance like no one is watching
                              Love like you've never been hurt
                              Live today like it's your last

                              Dxd with IC in June '06

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