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  • I'm going to try it!

    I've finally decided that I'm going to try InterStim. I was given the choice between InterStim and Botox, and personally trying InterStim is less scary to me than trying Botox (I have a history of retaining.... and I'm more afraid of having to cath to urinate for what could be up to a year and a half). So.... I'm waiting for the call to schedule the trial... and I'm very hopeful. If it doesn't work I can still try Botox. And for some reason.... I'm not feeling so scared about my future, or so hopeless today. While it may be unwise to get my hopes up.... perhaps I can spread my hope for this treatment into other much neglected emotional areas.
    "It's a little like wrestling a gorilla. You don't quit when you're tired, you quit when the gorilla is tired." :woohoo:
    -Robert Strauss

    Info:
    20 year old toilet slave
    Professional Bed Wetter
    Zillions of "UTIs" since I was 3 yrs old
    FINALLY diagnosed with I.C. 4/04
    Diagnosed with Grade IV Kidney Reflux 1/07

    Current Sitch:
    My InterStim trial has started... and so far IT'S WORKING!!

    Meds:
    For physical:
    Lidocaine instillations 3x per day
    Lidocaine urethral suppositories prior to cathing
    Elmiron
    Vicodin
    OxyContin
    Aleve
    Urelle
    Prelief
    Macrobid
    Atarax
    Estrace
    Uroxatral

    For Emotional:
    Lamictal

  • #2
    Good luck.

    Comment


    • #3
      liphuray, Interstim has been great for me. Three weeks ago I went thru trial, which was like a new world of comfort and dryness for me. Two weeks ago I had interstim put in permanent. Went to URO appointment yesterday, and incistion is healed, have dryness thru the night, no accidents on the way to the bathroom. It's a better life! Pain "in the butt" after the surgery was short term and not bad. The only problem that developed was a yeast infection from the antibiotic, which almost always happens with me. Took a single pill last night that will take care of that. Hope you have your trial soon so you can enjoy the good life. suebee

      Comment


      • #4
        I'm going for it too. :woohoo: I'll give the uro my decision tomorrow. It was scary, but I know in my heart that this is the right choice. Keep me posted and i'll do the same for you. It's nice that someone is going to be having the procedure done around the same time as me! We will have to compare notes Good luck to you, and I hope this brings you substantial releif!

        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


        • #5
          I love my stim and going in for an upgrade I have had mine for 4 years, and I oopsed and fell on it, so now it can't be reprogrammed.
          Good luck.. hey maybe we will all go together.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            I sure hope so Cindy! How long should I stay out of work for? Can I work with the trial? How long does it take for the implant to heal before I can work? Just curious, my boss is *****ing and I plan on going on short term disability more than 6 day out...

            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


            • #7
              Good luck to both of you
              God grant me the serinity to withstand the days ahead!!!

              My myspace link...
              www.myspace.com/patricia_luvs_matt


              Patricia

              In Memory of My Father (Lawerence) 1/25/2007

              Procedures:
              Interstim Sept 2001
              1st InterStim Removal May 2005
              2nd Interstim Implanted May 2005
              2nd InterStim Removed March 2007
              Hysterectomy 1999
              Tubes Tied 1997
              C-Section 1996


              Me and my kids


              Taylor (my daughter) Me and my daughter My son Cody and Taylor

              Comment


              • #8
                It's really perfect timing for me. I've taken a semester off of school, and moved back in with my parents. I have no commitments, so I have a long period of time to get better from the proceedure. I got the call today from the scheduler and my trial starts on May 15th. So I have a little awhile to change my mind.... but it also feels like forever and a day away. I just wanted to say to the person who called me "BUT I WANT IT NOW!!" (In a very whiny voice)
                I'm very excited to try something new. :woohoo: I used to see Dr Parsons (the San Diegan researcher) and I asked him what else I could do.... and he said "Nothing.... you're doing everything I asked you to. You're a very good patient, I just cant figure out why you're not getting better!". So I switched to a Dr. Albo (got a recommendation for him from my Dad's friends at the NIDDK and NIH) and he offered me several other options. I'm glad I switched... because I have some hope now.
                I still had a few questions for my doc (what kind of anestesia... making sure I was getting InterStim II... asking about the implant's implants on surfing and scuba diving.... if they'll change my pain meds....) and so asked him to call me.
                So I'll keep you guys updated.... and hopefully, Pumpkin and Tigger, I'll hear from you guys about your progress!
                "It's a little like wrestling a gorilla. You don't quit when you're tired, you quit when the gorilla is tired." :woohoo:
                -Robert Strauss

                Info:
                20 year old toilet slave
                Professional Bed Wetter
                Zillions of "UTIs" since I was 3 yrs old
                FINALLY diagnosed with I.C. 4/04
                Diagnosed with Grade IV Kidney Reflux 1/07

                Current Sitch:
                My InterStim trial has started... and so far IT'S WORKING!!

                Meds:
                For physical:
                Lidocaine instillations 3x per day
                Lidocaine urethral suppositories prior to cathing
                Elmiron
                Vicodin
                OxyContin
                Aleve
                Urelle
                Prelief
                Macrobid
                Atarax
                Estrace
                Uroxatral

                For Emotional:
                Lamictal

                Comment


                • #9
                  Well, for all of you veterans, I have been hiding a secret. I have been contemplating having an Interstim placed(one of the dual channeled)and after having a body model (Leslie)that I actually got to see the insertion site and the control while she was visiting, it kinda turned the corner in my decision making. My doc, Dr. Patel in Winter Park doesn't do the dual chambered so I will have to go to Tampa or Gainesville. I just know this is a hot button issue and prefer not to start the thread that causes WWIII. I also need a sling and collagen injections to the urethra. Now to space this out with the new job while avoid my millionth case of pyelo or kidney stones. Keep me in your prayers. So, I'll be trying it too!:woohoo: :woohoo:
                  (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                  [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                  :angel: IC Angel Volunteer Coordinator :angel:
                  :) Contact me via PM or e-mail if you would like to help
                  I have learned all about life in 3 words: It goes on! :D--Robert Frost
                  PCOS 7/85
                  RSD 7/94 :headbang:
                  Endometriosis 9/98 :toilet:
                  Antiphospholipid antibody syndrome 9/99
                  Kidney stones--too many to count
                  Factor V Leiden mutation 10/02
                  IC 6/03 :evilsmile
                  Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                  "Spirit is an invisible force made visible in all of life"--Maya Angelou
                  "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

                  Comment


                  • #10
                    Might want to file FMLA

                    Pumpkin,

                    You might want to file for FMLA (Family Medical Leave Act) if you company is big enough. It will protect your job while you are out on disability. Companies can be great or can do sneaky things to get rid of people, we just need to make sure we have all our basis covered to avoid future problems.

                    I am sorry you are having to miss work and wish you the very best with the InterStim.

                    ads

                    Originally posted by humpieumpumkin View Post
                    I sure hope so Cindy! How long should I stay out of work for? Can I work with the trial? How long does it take for the implant to heal before I can work? Just curious, my boss is *****ing and I plan on going on short term disability more than 6 day out...

                    Erika

                    Comment


                    • #11
                      Babs.... what does dual chambered and dual channeled mean?
                      "It's a little like wrestling a gorilla. You don't quit when you're tired, you quit when the gorilla is tired." :woohoo:
                      -Robert Strauss

                      Info:
                      20 year old toilet slave
                      Professional Bed Wetter
                      Zillions of "UTIs" since I was 3 yrs old
                      FINALLY diagnosed with I.C. 4/04
                      Diagnosed with Grade IV Kidney Reflux 1/07

                      Current Sitch:
                      My InterStim trial has started... and so far IT'S WORKING!!

                      Meds:
                      For physical:
                      Lidocaine instillations 3x per day
                      Lidocaine urethral suppositories prior to cathing
                      Elmiron
                      Vicodin
                      OxyContin
                      Aleve
                      Urelle
                      Prelief
                      Macrobid
                      Atarax
                      Estrace
                      Uroxatral

                      For Emotional:
                      Lamictal

                      Comment


                      • #12
                        Good luck to all ... humpieumpumkin, hiphooray4peas, and Babs...

                        I had it done in February after a lot of thought, and find it helps my frequency amazingly well. I still have pain flares, but things are much more bearable now that I pee only 8 (give or take a few) times a day.
                        ****
                        Jen

                        *Diagnosed with severe IC in 2004
                        *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                        *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                        *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                        **I am not a medical authority nor do I offer definitive medical advice. 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.

                        Comment


                        • #13
                          hi there.. I guess it depends on your job.. If you just sit you would be ok to go back in a few days after the trial. After the implant I would stay home at least a week.. We all are so different and heal differently..
                          Good luck gals.. mat we all be "hooked" up soon
                          'The will of God will never take you where the Grace of God will not protect you.'

                          Comment


                          • #14
                            hey

                            I am so glad to hear you are feeling some traces of hope today!! After all, it really is the most we can hope for AYY?!! I really hope all goes well. .and that tomorrow you have even more hope than the day before!! Here's an to help make sure!! Warmest regards.. and ALL the best to you!! and then some!!
                            Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                            Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                            Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                            Comment


                            • #15
                              Barb I dont think you would start something saying you wanted to try it. For me, personally for you and all the others trying it, I hope it works and it will change your life. Because like I say if it helps someone that is one less person dealing with IC on a daily basis. I know it can be contr. with some, but I try and stay netural with my ideas and opinions on it.

                              GOOD LUCK TO ALL !!!!!!!!!!!!!
                              God grant me the serinity to withstand the days ahead!!!

                              My myspace link...
                              www.myspace.com/patricia_luvs_matt


                              Patricia

                              In Memory of My Father (Lawerence) 1/25/2007

                              Procedures:
                              Interstim Sept 2001
                              1st InterStim Removal May 2005
                              2nd Interstim Implanted May 2005
                              2nd InterStim Removed March 2007
                              Hysterectomy 1999
                              Tubes Tied 1997
                              C-Section 1996


                              Me and my kids


                              Taylor (my daughter) Me and my daughter My son Cody and Taylor

                              Comment

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