ICNJess
01-30-2004, 07:13 AM
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
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