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  • Update on my Bion

    Still doing very well on my Bion. I do have some pain at night, do still need to use the Percocet quite often in order to get to sleep, but I am getting better I think, slowly. I am comfortable almost all the time now during the day, and my urgency/frequency is way down, probably a bit less than half of what it was.

    In fact I just recently filled out my first post-Bion-activation 5-day voiding diary, and I remember what my entries were in my pre-Bion voiding diary, and I can tell you that I'm voiding roughly only half as often or less as I was before. Right now, I'm voiding between about 9-11 times in 24 hours. Before, I would void anywhere from about 22 times per 24 hours (my best days) to over 40 times in 24 hours (my bad days). Since normal voiding is about 7-8 per day for most people, I am delighted to think that I am "almost" normal in my voiding habits now.

    My husband especially noticed the difference on a recent long car trip we took. We are moving to Ohio from the Northern Virginia area in June, and recently drove there to look for place to live.

    Normally, on car trips, either I have to take a Percocet to shut my bladder up (and even then it only works just so well, it doesn't make me like a normal person exactly) or I have to hit every single rest stop (every 15-30 minutes).

    This time, my husband was amazed and shocked at how long I was going between stops. He said, "I have to go to the bathroom more often than you do, now!" And it was true that at one point, he had to go and I didn't feel any need to go. So that was kind of amazing. My husband thinks I'm pretty much cured right now, because of this device. I wouldn't go that far, but I know that my voiding is very normal now. The only thing is, I do still have some nocturia (going at night) that is maybe more than average. That's where those extra couple of voids per day come in, I think. I void like a normal person now during the day, but at night when I should be sleeping I still have to go to the bathroom 2-4 times. But that's not so bad, I mean it used to be I'd have to go 9-10 times on my good nights and much more than that on my bad nights. I can live with 2-4.

    Oh, and I noticed my bladder can hold a lot more now. Twice as much, or pretty close to it. Before, my biggest void was one or two voids where I managed to hold 4 ounces (generally after waking up after taking Percocet). Now, I had quite a few voids that were 7 or 7 1/2 ounces, and most of my average voids were 3 3/4 ounces to 4 1/2 ounces, whereas before the normal was maybe 1 1/2 ounces.

    The only part that isn't perfect just yet is that my bladder still gets irritated around my periods, if I eat or drink the wrong thing or take the wrong medicines, and at night. So I do still count on Percocet to help me during those times, for sleeping at night. But I no longer need it during the day, and I find that often, half a tablet of Percocet works just fine. So I can see that the Bion has helped a good bit with the irritability factor/pain factor, although it has not eliminated it entirely 100% yet. (Actually they told me, not to expect it to help any with the pain, as it's for urgency/frequency rather than pain, but of course we were all hoping against hope it would help some with the pain, and I really do believe it has helped me some. And maybe it will help me more as time goes by.)

    I was thinking today, that if all IC patients have pretty much the same experience as I have (I know, I know, I'm just one patient, don't know how others will respond) then this device could be a really great tool for helping with IC, especially since the surgery isn't as bad as for the Interstim and since there are fewer side effects.

    I wonder if I should have put this post under success stories? I hesitate though because this is an experimental device, I'm really happy so far but I don't know what will happen down the road. So I'm still kind of just...taking it one day at a time and trying to let you guys know how it's going so that in case you get a chance to try a Bion, there will be information here from people who have undergone the trial. I hope more people will write and give lots of details so it will help everyone if they have a decision to make about the Bion.

    Thanks for letting me give you guys an update on how the Bion is working. I am now approximately 45 days out from when the Bion was first activated.

    Blessings, Lori

  • #2
    So thrilled to hear about your so far success. I know car trips aren't as rough on me either since my Interstim.

    Comment


    • #3
      Thanks for updating us on your success.. I am so happy for you.
      hugs
      brat
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment


      • #4
        I Am So Happy To Hear The Bion Is Working For You. An I Do Hope It Will Be A Good Thing The Ic'ers Too .we Need As Many New Things As We Can Get,i Sure Would Like To Hear Of Something That Helps With The Pain.i Have Wanted To Post But Can Not Seem To Be Able Too,guess I Will Just Keep On Answering Like This.i Am Having Some Problems ,but Don't Think It Is All From My New Inter Stim. Lol Wishing All Good Things For You.
        Ruby Jean

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        • #5
          YAY... so glad to hear that your frequency is definitely reduced !!!
          ****
          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


          • #6
            Thanks, you guys!

            I should say, too, that I'm not noticing any bad side effects or anything. In fact, unless I am consciously trying to "feel" my Bion working, I don't feel it at all anymore, it's just background stuff I guess.

            Blessings, Lori

            Comment


            • #7
              Lori...I am so happy this is working for you and I so hope it continues. I remember when you first came here and how you were suffering. I am so glad things are turning around for you.
              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


              • #8
                :woohoo::woohoo: I am so happy it is helping you so much! Thank you so much for sharing! After all that you have been through you really deserve some continued success!
                Faith, Hope, and Love,
                Katrina


                I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                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.
                or find me on facebook http://www.facebook.com/kat671?ref=profile
                Be the Miracle! & Pay it Forward!

                [email protected] please contact me...I am here to help!

                Comment


                • #9
                  Lori,

                  I am so thrilled for you!!! :woohoo: :woohoo: :woohoo:

                  So you are going to become a buckeye? What part of Ohio? I am in the Dayton area and am wondering if you might be transferring to WPAFB. My hubby retired from there in Jan. We will be moving back to my hubby's home state of NH within the next year and are getting ready to put the house on the market. Hmmm........ Lori, I know this great house in Ohio that is going to be available and is already adapted to IC...lots of potties and all with comfy padded seats Seriously, though, welcome to Ohio!



                  I know how difficult your IC has been and am so happy the bion is working so well for you!!!


                  Annie
                  Annie

                  IC
                  Ulcerative Colitis and IBS
                  Pelvic Floor Dysfunction

                  _________________________________________________________
                  Retirement is great! Work is highly overrated!!!
                  ---My dear hubby

                  ________________________________________________________
                  Never go to a doctor whose office plants are dead.
                  ---Unknown

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                  • #10
                    Lori,
                    I'm thrilled to hear about your success with the bion. Woo hoo!!!
                    mom_in_ma

                    Comment


                    • #11
                      Lori,
                      I'm thrilled the Bion is working for you. Good luck with your move to Ohio.

                      Hugs,
                      Barb
                      (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]

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                      • #12
                        Hi, Annie, yup, my hubby is going to be stationed at Wright-Patt! He's Army, but will be teaching Physics at AFIT. They pull instructors from all the branches of service.

                        We already bought a place in Beaver Creek, LOL, or I'd take a look at the home The one we got has 3 toilets, that's important, LOL! It was kind of a whirlwind thing, we got there and said to our real estate helper lady, "we have two days to buy a home..." We looked at fifteen places and found one we both loved.

                        We just hope the housing bubble in this country doesn't pop just when it's time for us to move again in three years and re-sell....

                        Thanks again to everyone for the well-wishes. I just wish they'd invent something that works for urgency/frequency AND pain. I mean, this is helping me some, I'm sure of it because I no longer spend day after day in pain, the pain comes only mostly at night and sometimes around my period, but still...I wish the pain would go away entirely. I hate, hate, hate having to ask doctors for narcotics, I hate it so much. It's so humiliating. And I know what they think. Well, I will cross my fingers that I will find a compassionate doc at Wright-Patt. Who knows.

                        I hope they find a cure for this soon. I'm seeing more and more people diagnosed with this, you know? I don't think it's just that the doctors are catching it more often - although that is happening now more too which is good - but I think it's just in general becoming more common. We need a cure so badly.

                        Blessings, Lori

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                        • #13
                          Lori, Be Sure To Keep Us Posted On How You Are Doing. I'v Told My Uro About The Bion And He Was Interstied On About It. He Does A Lot Of Inter Stims,but Is Always Looking For New Things With The Ic. Good Luck On Your Move .and I Shall Pay That You Will Find A Good Doctor.
                          Ruby Jean

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                          • #14
                            Um, I hate to be ignorant, but I dont know what a Bion is? Is it similar to the interstim?
                            Just wondering and happy it's working for you.
                            Bianchi

                            Comment


                            • #15
                              Lori
                              I am so glad that you are doing GREAT. I hope that the bion is the new thing for us ICERS with the frequency issues like myself. Keep us posted. Good Luck on the move.
                              Blessings,
                              Ruth

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