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Interstim Journal II -Two days to go til first stage

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  • Interstim Journal II -Two days to go til first stage

    Hello everyone! I think most of you know that I am having my first stage surgery on Friday. Since Jen's diary has been so helpful to me and I'm sure, to others, I thought that I would do one as well. Jen's main issue is urgency/ frequency, and mine is severe retention, so those of you suffering from retention will get my view on the surgery.

    I have been self-cathing for about eight months now. I can void on my own a couple times a day and then I cath a couple times a day. In reality, I shouldn't be voiding on my own at all, because when I do, I always have to push to get the flow going and to keep it going. Not good!!! Also, I have bladder spasms that seem to worsen after I void. And, whether I cath or void on my own, I have urgency after the void. I can usually go back into the bathroom or re-cath and get more urine out. Also, I have pretty much lost all urges...I don't ever feel as though I have to go, except for the urgency after voids. Other times, I just know that I need to because it's been many hours or sometimes I feel a slight pressure. Also, I have severe constipation not caused by meds. I go anywhere from three to four days to two weeks without a bowel movement! I often even take correctol or senekot and it's still days before I can have a bm...and the straining is horrific to get it out, with or without stool softeners and laxatives. And, I have the "urgency" after a bowel movement as well...I always feel like there is more there but can't get it out. So, in one sense, I guess this is better than the frequency that many suffer, but in another, cathing sucks and I am always in pain and worried about infections and worried that I won't be able to get the urine out through voiding OR cathing (this has happened before and I thought I was going to die it hurt so bad).

    Pain-wise, I have severe PFD also, which causes just about constant pain along with the IC. I have severe lower back pain, lower abdominal pain, bladder spasms, and pain directly from the urethra. I describe the back pain as feeling like I have 50 pound meat hooks hanging from my hips. I have been doing physical therapy for almost a year, and we have seen little progress in my pelvic floor muscles. They simply will not relax. My hubby even went to PT with me to learn how to do some of the internal massaging, and usually, he can only fit one finger into my vagina, and then he's apologizing because his fingers are too big! I can't remember the last time we had intercourse, but I do remember that it was horrifically painful.

    So, that's my problem in a nutshell. My doctor (which, incidently, is the same as Jen's!) and I discussed interstim for months, because he wanted to exhaust all other viable options before proceeding. We reached that point in December and scheduled my surgery.

    I began my antibiotics yesterday. Boy, do they make me nauseous!!! I spent this afternoon hovering over the toilet and dry heaving severely. I had nothing left in my stomach, but I continued to heave and my mouth continued to water significantly (as it does when I vomit). So, I am now on the couch with the trashcan beside me. Anyway, I also quit taking my Elmiron today (per dr. orders). Maybe all my hair that I've lost from Elmiron will grow back in the next couple days while I'm off it. LOL!!

    I did my pre-op phone call with the hospital on Monday and the lady was so very nice! My procedure is at 10:30 and I have to be at the hospital at 9:30. My hubby is in the middle of a major project at work, so my mom is going to come and pick me up and drive me there at 9:30 so my hubby can just go straight from work to the hospital about 10:00. My dad (who is a semi-retired attorney) has a seminar today through Friday, but has decided to skip Friday so that he can be there for my surgery. I am sooooo lucky to have such a supportive family!!! My dad has even decided to get the IC ribbon tattooed on his arm with my name underneath...he currently has NO tattoos and if you saw him or met him, well, he's not the tattoo kind of guy, so it really brought tears to my eyes when he told me that.

    Anyway, the nurse also told me that I had to get some special cleanser to bathe with Thursday night and again Friday morning, and luckily, my mom is a nurse so she just got some for me at the hospital so I didn't have to worry with it. I went to Target yesterday and got some comfy blankets to sleep with, and I went to the grocery store and got all my favorite comfort foods and drinks. I am going to try and get the house cleaned and get some laundry done this afternoon, but I know that my hubby will yell at me when he gets home, because he wants me to lie on the couch and just rest, especially with the nausea. Sometimes it's easier to try and do some projects, though, to keep my mind off things.

    I also started my voiding diary yesterday, and I have tried to be very specific with my symptoms, having to push to void, the pain that increases after a void, etc. I know the more you write the easier it is to see a difference and if necessary, the easier it is to convince the insurance company for the permanent implant.

    I am really nervous about the surgery, not really about having surgery, but this is the first surgery I've had that wasn't a "sure thing." I know there's nothing I can do to make the chances better that the interstim will work for me, so really all I can do is hope and pray that it does help. However, I just have a feeling that I will be really depressed if it doesn't work...because I feel like this is my "last chance." I know there's other meds to try, more therapy to do, and hopefully future advancements, but I really feel like this is the last REAL possibility that I could get some better and lead a more normal life. Packing catheters and KY and a bowl and all that other crap really takes up too much space in my suitcase...I could probably fit another pair of shoes in that spot!!! LOL.

    So, I guess that's about it for now. I hope that this journal will help some of you considering interstim, especially those of you with retention and similar problems.

    Claudia

    ~Claudia

    "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



  • #2
    Good luck --- hope your prep goes well. Washing with Hibiclens is like smearing red goo all over you, but luckily it only has a very slight antiseptic odor, so it won't be too bad

    I'm not sure, but it seems they've double booked our surgeries. My surgery is also supposed to be at 10:30 (with 9:30 arrival) for my permanent implant ... LMAO Just double-checked all my paperwork and also called the surgery center, and they confirmed it. Perhaps you should call too so that they have time to rearrange things if necessary and there isn't a traffic jam on Friday?

    Last thing we need would be to get all stressed out because the schedule's been screwed up, huh?
    Last edited by Sarojini; 02-14-2007, 09:37 AM.
    ****
    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


    • #3
      Why am I not surprised??? Dr. Evans is good, but two surgeries at once...I'm not so sure! I will call them as well to double check! See you Friday!!

      ~Claudia

      "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


      Comment


      • #4
        Don't ever feel this is your last chance....View it more like one more option to have in conjuction with other treatments for your IC...It will not be the end-all be all for your IC. You will still have to do PT and other meds, or maybe not. I PM'd Jen a few tips regarding surgery. I'll see if I didn't already delete them, and forward them on to you.

        How Exciting! Good luck and keep us posted on your progress too!
        y.
        Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn

        Comment


        • #5
          Thanks, Yvette. I would really appreciate the surgery tips if you still have them. And you are right, I know even with the interstim, I still have the meds, the PT, the flares, etc. The interstim would help some of my symptoms, but I guess even if it doesn't work, well, I'm no worse off than when I started, and we can just look in a new direction.

          ~Claudia

          "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


          Comment


          • #6
            Well, just a few hours to go now. I am starting to get the butterflies in my stomach. At the same time, I am ready to get in there and get this surgery going!!!

            ~Claudia

            "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


            Comment


            • #7
              Hello Topcop,

              I'm looking forward to reading your diary on this procedure. I am currently in the thinking stages of the Interstim. I am leaning towards having this procedure done as I have urinary retention too. I recently saw a new doctor and he tells me there is a 60% chance of getting rid of my suprapubic catheter, which would be wonderful! I have had this tube now for 5 years and tired of it. I am going back to see him on March 28 to let him know what my decision is.

              Good Luck with your procedure. I wish you all the best.

              Ann

              Comment


              • #8
                Ann,
                Thank you so much for your kind words. I am so sorry about your retention and catheter. I hope that my journal will be informative and helpful to you in making your interstim decision. It will be really interesting to me to see how the interstim helps with the retention. I am also excited actually to see if it helps with my severe constipation.

                Claudia

                ~Claudia

                "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


                Comment


                • #9
                  Hi Claudia;

                  Good luck and I will be thinking of you Claudia..
                  I hope all goes well !!

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

                  Comment


                  • #10
                    Hi! Just want to wish you well on your surgery tomorrow. I hope that it goes well for you and brings you alot of relief. I am anxious to hear how it goes for you and looking forward to reading your posts when you get to feeling better. Hugs, Amy

                    Comment


                    • #11
                      Just wanted to let you know that I am praying for you and will be thinking of you tomorrow as you have your surgery.
                      Miss Bessie

                      Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

                      Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

                      Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

                      Comment


                      • #12
                        Here we go...

                        Just waiting on my mom to get here so we can head over to the surgery center. I have tried to keep busy this morning, I woke up at 6am and just couldn't get back to sleep.
                        I hope to be able to post late this afternoon or this evening to let everyone know how the surgery went and how the interstim first stage is working.
                        Thank you to everyone for all your thoughts and prayers!!

                        Claudia

                        ~Claudia

                        "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


                        Comment


                        • #13
                          Waiting with great anticipation to see how you are. Sure hope everything is okay and that this will work 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


                          • #14
                            HOW DID IT GO!!!!

                            You and Jen have been quite an inspiration to me. I am also in the thinking stages...Conventonal treatments are too bothersome to my system-I.E. severe constipation and drowsiness... keep me posted you two! I hope this is just as much a blessing to you as it has been for Jen!!!

                            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
                              Erika,

                              I just posted my first post-surgery journal. Check it out!!!

                              Claudia

                              ~Claudia

                              "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


                              Comment

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