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An updated story

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  • An updated story

    A quick note: My story is attached as always on the footer of the posts I do. I wrote Jill one day awhile ago and asked that she do my story because I just want to give hope. There aren't many of us around that are my age, 21, and I don't even know if there is anyone my age with the Interstim around here. At any rate, I just want to update things a little since I'm no longer on Elmiron therapy, as it did not work for me. But hey, at least I tried.

    My story leaves off at trying out Elmiron. Well after 6 months of it, it wasn't working. I tried DMSO, caudal blocks, Elavil, Celebrex, antidepressants, Vioxx, (I couldn't take Atarax or any other antihistimines, I can't tolerate them) as well as other numerous things, and nothing was working. I was voiding 40 times a day and I was miserable. I spent all day in the house, near the toilet, crying my eyes out. This was not a life. I'd go to the doctor's office and leave in tears. DMSO was making my bladder worse, the solution would go in and halfway in my bladder would spasm and leak the solution out and spray. It was painful and I would flare for days after.

    The pain management doctor said to me one day, after trying meds and caudal blocks, "Have you ever thought about InterStim therapy?" I sat there shocked. I had heard of it, of course, and thought it was barbaric and cruel from all that I had heard about it. "I've heard of it, but I don't understand it," I admitted to him. He then began to explain how it worked, all about the surgery, and then told me he would talk to my urologist about it, since spasms was a big IC problem for me.

    I went to my urologist and he thought it was a good idea. He then referred me to the urologist who would be doing the surgery. Before I went to see him, I got one more opinion. That urologist said I was a great candidate as well. So my trek towards relief was to begin...

    I arrived at the uro's office who was to do the surgery with my parents. They were skeptical and worried, as was I. We went in and talked to the uro. Immediately he did a cystoscopy, and also a scan to see how much urine I was retaining. He then began to explain InterStim to me and how he would do the surgery. I sat there with my jaw dropped. "You want to do what to me?" Cutting me open, inserting leads to nerves, implanting a pacemaker like device...I was 20 at that time, and I was scared. I was too young for this.

    He gave me phone numbers of success and failures, and told me to think about it, and if I wanted to go through with it, give him a call. He added this, "Jessica, I know you are scared, but this is a good chance to get to feeling halfway normal. You are a very good candidate and I feel that I can help you." I went home, the ride home was quiet as the trees flew by and my parents chatted apprehensively, telling me that they would support my decision 100%.

    I took a short walk that night (would've been longer but I was peeing every half hour!) and decided it was the best way for me to go. Be strong. Be brave. You've come so far.

    On September 11, 2003 I went in for my trial. They prepped me and sent me in. I was so nervous. I laid down on my stomach on the operating table as they put the drug in my I.V. to make me fly. I felt uneasy. I wanted to jump right off the table and say "forget it!" But I stayed.

    The doctor came in and so did Dave, the Medtronics rep. They both assured me everything would be ok, just to give them honest answers. I layed there and took deep breaths. The nurse took my hand and said everything would be fine. I felt like a child!

    The surgery began. A small needle poked me in the back and Dave said "Where do you feel the stimulation?" I told him. This went on for an hour. It was painless, and I was beginning to not be so embarrassed that I was baring my rear end to the medtronics rep, my doctor, and a dozen nurses, both male and female.

    I woke up in recovery, with Dave programming my trial box. We went home and I didn't pee until we got home. (An hour long ride) My mom had to help me get to the bathroom since I was still very groggy and tripping all over myself. I had to pee. And the most amazing thing happend that could ever happen to an IC patient--I peed out more than 3 ozs!!! It was a stream that didn't stop for a spasm that just kept going. My mom was in tears. "You haven't peed like that ever!" (LOL, Moms...she'd hear me when we'd go to the ladies room struggling to pee and only a trickle would come out)

    The trial went by very quickly. I had great success. Then came the implant. I was knocked out for that, and when I came to Dave was programming my remote.

    I still have pain, but I only void 4-10 times a day now, and never get up anymore. Pain is my main symptom now...Interstim is not for pain, I was told that and was happy just to be able to not become a mate to my toilet.

    So that's my story--very long--all truthful. I believe myself to be a success story because I no longer get spasms, or pee 40 times a day and 10 times at night. I don't have urgency, or urge incontinence. I may have pain, but what ICer doesn't? I am just grateful that the other aspect of IC is controlled.

    Much happiness and success to all,
    Jess grouphug
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

  • #2
    what a great story. You have made everything so clear and easy to understand on the interstim procdure.. I was out like a light) in and out but when i was out i was out
    thanks so much for sharing such a success story.
    'The will of God will never take you where the Grace of God will not protect you.'


    • #3
      grouphug grouphug Jess tears and smiles Thanks for sharing your story with me and others. I needed to hear it in case I go for it. Right now I am in a remisson with my frequency and urgency as long as I watch what I eat and drink. I sitll can't eat heavy foods. stomach doesn't like it. I am so proud of you. Thanks for sharing the story. I love you. angel angel
      Hang in there , There is hope.
      There is hope. Prayer works.

      Love, Debbie


      • #4
        MANY HUGS TO YOU ! grouphug ... grouphug
        kissing : Brenda.. angel
        OBEY ACTS 2:38
        Remember you are not alone in your pain:Ask Jesus to hold your hand...HE WILL!!!!!!


        • #5
          I am so happy for you that it worked for you in reducing your frequency- it must be such a relief to you to sleep through the night! I hope that your pain will go away too, but thanks for sharing your story.


          • #6
            Jess - You are such a wonderful woman with such a great story to share. You are absolutely one of my favorites here and you are always giving of yourself to help others on the boards. Bless you. kissing

            And I had to laugh as I read one part of your update. I thought, "Now only an ICer (me) would get teary eyed reading how her mom overheard her peeing and was so excited for her!" lmao That's awesome!

            Diagnosed August 2001

            Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)

            Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

            I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.


            “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

            “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy


            • #7
              Dear Jess,

              Thank you so much for sharing your story! Sounds like you've been through a lot, and I'm just so happy that you found something to help you.

              Love and hugs, grouphug
              My story of healing and hope


              • #8
                Thanks so much everyone for the positive feedback. You all really made my day.

                Many hugs and love to you,
                Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


                • #9
                  Dear Jess hi ,

                  Your story is incredable! You have a positive attitude that inpires and gives hope to others. Thank you for sharing it! Sleeping through the night must be wonderful. I hope it makes a BIG difference in the way you feel. I think you are a strong person!

                  P.S. Congratulations on 3 ozs lmao



                  • #10
                    Jess, your story is definitely awesome, there is no doubt about it. I could not help but laugh also at the comment your mum made, I bet she was absolutely delighted for you, I know it must have been hard on her to see her child suffering the way you had been. It was really interesting to read about the interstim procedure though, so it sounds similar to a pacemaker, but in your butt. I am so glad that you do not have the toilet for a mate anymore, and you can have some rest at night instead of frequenting the porcelain bowl. Wonderfully written Jess, and informative. Thank you so much for sharing, in the future I hope they can come out with something to help you with your pain. The words courage, and strength, to face life head on, fits you very appropriately Jess. Hugs for a very strong young woman, luv ya mum Iris. hi kissing grouphug
                    Today and every day you are loved, so don't be anxious about tomorrow, God will take care of you tomorrow; Live one day at a time.


                    • #11
                      Jess, thanks for the update. Interstim is very scary and your story explains it so well. Thanks for sharing. hi
                      West Virginia Interstitial Cystitis/Prostatitis Support Group Leader
                      [email protected]


                      • #12
                        Hi Jess, Thanks so much for taking the time to type out your story--it is so honest and heartwarming. I'm so glad that you've found some relief too. Here's hoping the future brings more your way! Best wishes, little bear


                        • #13
                          Thanks so much! I wanted to show how positive the Interstim experience can be, and show that it really isn't that scary! lmao It's just helped me tremendously and I wanted to share that with all of my ICN family. grouphug After all you've all been there for me when I was battling IC at it's worst and now I'm at a good place frequency/urgency wise and you've all supported me. Thanks for being there.

                          Hugs and love,
                          Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!


                          • #14
                            I really appreciate the details. I'm waiting for a hospital in Columbus, OH to be "ok'ed" for the procedure currently. I have an appointment on the 9th where I'll get more information regarding the when's and where's, but we are planning on having the implant "installed" as soon as possible. Spasms are my largest challenge, so I'm really hoping to have the success you have had. Thanks again for sharing your experience.


                            • #15
                              Hi Rob,

                              Interstim has helped me greatly with my spasms. If you'd like to talk about the interstim or have any questions, you can email me [email protected]. Good luck!!!

                              Hugs and love,
                              Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!