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Interstim Diary -- Day Thirteen, 2 Days 'til it's Permanent

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  • Interstim Diary -- Day Thirteen, 2 Days 'til it's Permanent

    Well, it is almost time -- 2 days left until I get the permanent Interstim implant. This is when the nerves begin in earnest. What if something goes wrong? Should I make them change it to full general anesthesia rather than just deep sedation, even though my doctor, who has done hundreds of these, says at least 80-90% of his patients do fine with deep sedation? But if I do that I have to deal with the nonsense that comes after general -- sore throat from being tubed, sore muscles from being paralyzed during surgery, higher risk, etc.... no, I think I'll go with the sedation still.

    What if the permanent thing doesn't work as well for some reason? There could be all kinds of reasons... but I've come this far, and I am going through with it. The trial has worked SO well I have to go for it. I owe it to myself and also, to my family. Visits will be easier now because I can ride in a car without having to pee every ten minutes!

    I can imagine a life with less frequency and urgency ahead of me, and while I know I'm still going to flare sometimes, and that the pain is not gone, (hey, that's happened already) I also know that with the frequency eased up the flares will be different, just a little better when the frequency and urgency is just a little better.

    What I am excited about is not having this stupid cord coming out of me anymore. After a while, Harold (the name I've given to my external generator) and this cord have become a royal pain. Gotta watch it when washing, gotta make sure I sleep on one specific side so I don't pull it out of my skin, gotta sit funny in the car so a stray bump doesn't move it, gotta keep from bending and twisting too much doing things around the house so that the cord doesn't pull on the leads or get caught on anything... ugh. Cord, cord, go away, don't come back another day!!

    There is another annoyance to all of this. While I have figured out how to bathe pretty well using the handheld showerhead and a stool in the tub, I ... um... have found it hard to wash my... uh... butt crack. It's harder than you'd think to spray back there without spraying or splashing the dumb cord area. I've tried using washcloths or hands but inevitably soap has gotten stuck back there and I've burned or itched. Finally, I had an idea... I went to Walgreens and got some Pampers Baby Wipes for Sensitive Skin, since these are meant for cleaning sensitive bum areas. Now, after attempting to wash back there, I get out of the shower and finish cleaning with the wipes. Voila... no soap residue, no sensation that things aren't "fresh" back there. Ha!! I have beaten the cord yet again ... Jen-50, Cord-0 !!!

    Finally, at the moment there is Hubby, who is still home after his bout with what is likely food poisoning -- just very, very severe poisoning. He is saying he still has bad stomach pain. I made him use the pain scale and he said when waves of cramps come it's about a 7, and in between it's about a 3. Now, it's been several days since this happened, and he has been on Cipro (the antibiotic of choice for the food poops). I would have expected him to feel better by now... although I suppose it could have been so severe that he is still down for the count. It's not completely unheard of...

    While I am worried and wondering if something else is going on, I can't help but wonder if perhaps he is, how shall we say, looking for sympathy and TLC. So far he's gotten soup made for him and he's gotten me to drive (cord and all) to the store to get Sprite and crackers for him. He's gotten a lot of the "Poor baby" and "Poor Honey" stuff. He's gotten to stay in bed watching TV and surfing the Net. Also, he has been rather fed up with his job recently, and staying home is a great way to avoid facing problems there... I don't know. I hate thinking that he is dragging this out on purpose... what if something else IS wrong?

    I think that, if he is not better by the weekend, I will tell him that we are calling his doctor to schedule a colonoscopy. Now, he is terrified of having something stuck up his butt (especially since years ago, he had a scope and they cruelly did not sedate him)... so if he is indeed looking for sympathy, I think that will signal to him that playtime is over. However, if he agrees, I will know he is really ill and that we need to worry about things for real.

    He says, however, that he will be able to take me to my surgery on Friday. If he backs out, I am in big trouble. If he dares back out, he is in BIG TROUBLE. I mean, big. Good thing we don't keep guns in the house... (Kidding...) LMAO....

    No, I think he will take me, come hell or high water.... he's pretty good about that...

    *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.

  • #2
    keep faith! iit will all work out how it is meant to be, and you will be on the meand soon. <breathe>
    Also, i had one freind with food poisiooon from fish and it was many weeks before she was mostly better... they can be touhg to rid. It would be good to keep in touch with his doctor though, let them decide what best corse is.
    hang in there jen


    • #3
      sorry hubby is still feeling bad... I would call the doc anyway just to be safe..

      All your feelings are normal before a surgery, if by chance it dose not work as well it is just a matter of reprogramming... also tell him since you work in a lab, to have the magnets turned off,, the last thing you want is to have to go and get reprogrammed all the time... I found out that best buy always reprogrammed me when I went into there store..
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4
        You go girl...Full steam ahead!!!!! Positive fibs coming your way from your old stomping grounds. This will work...This will work...This will work.

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

        Where I can be found most days.

        Link to the ICN Patient Handbook:

        Link to the IC 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.


        • #5
          You are going to be just fine..Stay positive!!!!

          I will be praying for you, that everything will go as planned and the permanent one will work just as good as the temporary one ...Hey or maybe even better!!!!!!!!!

          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:

          Diet Reference Sheet:

          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.


          • #6
            Sorry your hubby is still under the weather. He may be really ill, he may be dragging it out just a smidge...but I think your colonoscopy idea should work perfectly! And I am sure, no matter how crappy he feels, he will get you to and fro surgery on Friday.

            Stay positive and try not to worry (everyone keeps telling me that, too). See you Friday!!



            "A heart is not judged by how much you love; but by how much you are loved by others."
            ~ The Wizard of Oz

            "If I ever go looking for my heart's desire again, I won't look any further than my own
            back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy