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Going the distance

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  • Going the distance

    I first found this website in 2006, I think. It was a huge help to me, and then I drifted away. Now I'm back because I'm going through so much all over again, despite the numerous surgical procedures, the 14 medications that I'm on, and the cocktail of pain meds I put in via catheter (instillations) to temporarily ease the spasms and pain. Back then, I knew that I was going to have an interstim placed by an amazing new specialist I found aIt Strong Memorial Hospital in Rochester, NY. It was a scary, but exciting time b/c I was SURE that all of my problems would be over! The pain, the medication (I had been on Methadone for goodness sakes! I hated the thought of the addiction to it, so I stopped it just a few months after starting it! People noticed the difference in my personality, it was hard for me to work on the medication, and no matter how hard it was to deal with the painI did NOT want to be on Methadone!!

    You'd think after everything I explained and the medications I'm on, that I would be a person with a very low pain tolerance. It's just the bladder, after all! I was sure I must be, because who doubles over and drops to her knees because of pain in the bladder? Had I not first been sent to Pelvic Floor Rehabilitation, I would still think that. [I]My pelvic floor rehabilitation,[I]and I know everyone's is different, was having electric stimulation placed vaginally to strengthen the pelvic floor. Usually, my PT said, people asked her to stop when the stimulation reached about a 12-14 on the scale that she used. Me, however, didn't even feel it until the stimulation was about 42 or so. Once, she had it all the way up to 50 and she refused to go any higher. After 10 weeks of constant PFR, she discontinued my treatment because it wasn't working at all, and my spasms got progressively [I]worse after each treatment![I] I, nor my doctor, ever thought that I had a low pain tolerance again! It was at that point that I was considered a candidate for the interstim, because there were no other alternatives!

    So, I went through the procedure and had the interstim placed. What a relief! I had the surgery on a Thursday and was back to work on Friday! I thought, no more[I] strong medication,[I]no more monthly hydrodistensions (I literally took a "long" lunch break and had my hydrodistensions then just to make it through to the next one) and certainly, [I][B]NO MORE PAIN!!![I][B] About 3 weeks later, I found myself in a total panic! It was the day before Thanksgiving and I was experiencing shocks from my tailbone to my toes. My toes curled up no matter what setting I used for the stim, and I was having electrical currents all along the pelvic floor! I was in incredible pain and there was no way I could put up with it!!! My doctor (who really is wonderful, but is struggling to keep me ahead of my pain) told me to come in immediately! That was a little harder than it seems, because the hospital is 3 hours away, the traffic the day before Thanksgiving is atrocious, we had a HUGE snowstorm that soon turned to a blizzard while we were on our way home, and anyone who has IC knows how hard a long car drive is!!! He just wiped the memory of the stim and reprogrammed it so there was no shocking. Good for now!

    Fast forward a year or so later and the pain just kept getting worse and worse, no matter how many times we re-programmed the device or what setting I had it on or how often I did my catheter meds. We were back to the option of methadone and I [I]WAS NOT HAPPY!![I] I started the methadone doses very slowly, but still had to take the other narcotics that I had been on for break-through pain. It seemed that every appointment they were increasing my medication. I was scared to death to tell anyone, I didn't drive for about 6 months because of all of the warnings on the labels, and at every appointment I had to be reassured by both my nurse practitioner and my Urologist that I wouldn't become addicted to the methadone. They kept telling me that if your body [I]needs the medication,[I]then you won't become an addict. Because addiction runs in my family, I was a person that [I]never, ever[I]finished a bottle of pain medication, even when I broke my tailbone three separate times or when I had my wisdom teeth out! And those medications certainly weren't as strong as methadone!

    Soon, it became clear that the meds and the interstim just weren't cutting it. I was still working, but I was having such bad spasms, despite the bladder installations 3 times a day that it felt like I was in labor! As a matter of fact, I wish I [I]had been in labor!![I] My quality of life was was work a 50 hour week and then fall into bed every night and spend at least one of the weekend days in bed all day every weekend! It was certainly no way to live. My surgeon at Strong discussed with me the option of having a second interstim placed on the other side! I had never heard of that! I consulted this forum again, but never found that anyone had a second unit placed. I had always kept my first urologist where I live, because he could take care of UTIs, adjust medications as needed (since so many of mine were "triplicate" medications that had to come through the mail & when I was in serious trouble he could take care of that) and just to consult with in case I needed someone immediately! By this time, my uro here was allowed to perform the interstim surgery. Prior to that, our hospital still considered the procedure "experimental," and he wasn't allowed to do the surgery. So, with discussions with both doctors, we decided that a 2nd unit would be the answer, and to avoid the 3 hour drive home following the surgery, the best option would be to have it done HERE!

    So, the 2nd unit is placed and once again, I had the surgery on a Thursday and went back to work on that Monday. I felt GREAT! For the first time in years, I had so little pain that I actually lessened my medication on my own. Before my post-op visit, however, we noticed that the wound didn’t seem to be healing very well. By the time I went to my doctor’s appointment, I had a lot of pain, itching, and discomfort at the surgical site…BUT, my bladder pain was GONE! I ever took the bold step of going off of my methadone completely…without doctor’s supervision!!! (don’t ever do that, I’ve done it a few times and the side effects are horrible, but at this particular time, I didn’t care!) Anyway, I went to the post-op appointment and my urologist seemed pretty concerned. He put me on a really strong antibiotic (because like most IC sufferers, we've been on so many antibiotics that most are ineffective) and asked me to come back in a week. I was still working, and the discomfort of the wound became worse and worse, but since my bladder pain was [I][B]gone[B][I]I couldn't believe that this was going wrong! When I went to my next appointment, my uro said that he thought the unit had to come out! I cried and begged him to do something else...[I]anything else![I] He scheduled me for a PIC line immediately and put me on an intravenous IV drip that I had to do twice a day. Again, I still held my full-time job through all of that. The biggest problem was that I was allergic to the antibiotic in the IV! I had a visiting nurse at least once per day (they wanted one there for each IV drip, but insurance wouldn't cover the amount of visits, and I had a crazy schedule!) The new idea was to take a benadryl about an hour before I started the IV, and to make it drip over an hour period of time rather than the 30 minutes it took. That meant getting up at 4:30 AM to take the benadryl, preparing everything for the IV, then laying in my chair for the hour of the drip and repeating the whole thing all over again at night before bedtime. What a pain! But, saving the unit was the ultimate goal! Working through all of this was so hard....the benadryl made me sleepy, the wound was opening and uncomfortable, and the medications paired with the benadryl & antibiotics just made me drag throughout the day.

    After all of this, I went back to my urologist and he said it didn't look good. That we had done everything, but the unit was working it's way out of my body and the infection had started to spread into my bloodstream. He scheduled me for surgery immediately and then an hour later, I found myself in yet another crisis, because when they did the scan to see where the pic line was to remove it, they found a blood clot just an inch below my right shoulder...I was so extremely fortunate that it worked out the way that it did because a clot that close to my shoulder would have followed the PIC line and gone straight into my heart. We all know what that means! So, I had to call my new boss (I had just left my agency about 8 months earlier to go to another non-profit agency doing the same job) and tell her I was having emergency surgery and that there was an indefinite period of time that I'd be out of work. It was a Wednesday, and I was pretty sure I'd be back at work the next week, but I just wasn't sure. After all of that work I had done to try to save this unit because it finally took away my bladder pain, it had to come out because my body or immune system just rejected it! It didn't just have to be removed, but because of the serious infection, the place where it was buried in my left butt cheek couldn't be closed. That meant visiting nurses several times a day until it was at least partially closed so my mom and husband could pack it and irrigate the wound twice a day. I had to see my surgeon weekly, and each time I thought he'd allow me to return to work, and each time he told me "no." The plan was to re-insert the interstim after it had been sterilized as soon as the first wound was healed and my immune system had recovered. (I think I forgot to mention that I have MS which has great bearing on my immune system, but didn't seem to affect the first interstim placement). 6 weeks to the day I had the 2nd interstim implanted once again in a lower spot in my butt. I was pretty sure that now, after everything I had gone through, I'd be allowed to return to work. Something happened in the surgery, however, that changed my life forever. My balance had been off quite a bit during the recovery period of the interstim removal, but right after the replacement of the unit, I lost my ability to work completely! I found myself in a wheelchair and even though a couple of weeks later, after much begging to my PC and surgeon, I was permitted to [I]finally return to work,[I]my boss told me she didn't think it would be a good idea for me to come back in a wheelchair. She thought I'd be a liability and once I was able to walk again, I'd be able to return to work. Since I worked with children and was very passionate about my job, she felt that if a child in my care got hurt or was a disciplinary problem, I'd risk myself by trying to go to the child. I had several periods in the previous 11 years where I had to walk with a cane or a walker, but never a wheelchair. I think she, like myself, felt that the wheelchair would be temporary. That was 2 years ago, and I'm still in the wheelchair. I'm beginning to slowly walk around my house holding on to things, but, I'm not quite ready to walk. I forgot to mention that a couple of weeks after my conversation with my supervisor, who had been a friend prior to coming to work for her (as a matter of fact at one time she worked for me at the other agency) I received a letter in the mail that my position had been eliminated. The job actually still exists, but it's titled something a little different and the responsibilities also changed slightly. That 2nd surgery totally changed my life forever!

    So now, after all of that, I'm back on all of my medications and we're trying a brand new procedure. I ended up being admitted to the hospital for a week this past summer because I was in such extreme pain that I had to visit that ER 4 times during a one-week period! They put me on dilaudin drips that temporarily eased the pain, but soon after I was in the fetal position rocking and crying! The last visit, they admitted me and transferred me to Strong, the hospital 3 hours away. There, my Specialist decided to try botox injections in my bladder during an hydrodistension of the bladder and a cystoscopy. It's 65 injections that "freeze" the bladder and provide relief for a certain period of time---it works for different lengths of time depending on the patient. That week they kept me pretty comfortable, but the botox injections don't work immediately, they take a week to 10 days to work & the pain from the injections hurt, of course, because they're in a place that stings because of the acidity of the urine. Eventually, however, the procedure works! We've found that about every 3-4 months I need to have the procedure. The last two times I've had the procedure I've waited just a few weeks too long because of scheduling...and those weeks before are excruciating! So, I just need to make sure I'm following the time schedule because now I know what works. Unfortunately, I'm still on all of my medications, and the few weeks before the surgery and the couple of weeks after it, I have to do instillations 3-4 times a day and my doctors increase my pain medication. Like the title says, I've "run the gamut!" But, hopefully, this will finally work. I can't imagine that I can handle having to go any further. I've read about people in the IC network who have had bladder removals or bladder replacements, and my surgeon has assured me that's not even in his mind. Also, because my doctors work so well together and they care about me personally, my local urologist is going to Strong to learn how to do this procedure so I don't have to travel quarterly to have this procedure done. In that way, I'm very blessed. I'm just praying that this, finally, is the answer!

    I'm writing a personal blog about my experience with Interstitial's not quite done, but will be soon. The link is:
    Besides IC, I suffer with MS (there are several schools of thoughts about this), IC, VV and IBS-C. Used to avoid ALL meds and solve everything herbally, boy have things changed!

    Follow (to the best of my ability) IC diet and IBS diet.
    Current Medications: Just had an interstim implanted 10-5-07 at Strong Memorial in Rochester. 2nd interstim placed 2-12-00 and then following an infection had it removed & put back in 4-?--09; currently having botox injection procedure done every 3-4 months; Current M ed:noritriptyline HCL 40 mg nightly, Gabapentin 3 X daily, 10 mg Toviaz 1X daily; 5 mg Rapaflo 1 X daily; diazepam 2 xs daily for spasms, macrobid 1 x daily during even months, paired with trimethoprim 1 x daily during odd months to avoid UTIs and becoming immune, prazosin 1 X daily, oxycarbenzapine 2X daily, baclofen 2X daily, som a 3X daily & hydrocodone or oxycodone for breakthrough pain management. I am back on methadone 3 xs daily for pain management--things just got too hard. Now diagnosed with VV and I apply lidocain 5% in a cellulose cream 3xs daily. I also take capsulated cholorophyll with each meal, bifidophilus flora, and I-X for iron. I have, as needed, instillation of lidocain jelly, heparin, kenalog, and Marcaine through catheterization.

  • #2
    You really have had an extremely difficult time. I hope you will continue to be helped by your current treatment plan.

    Sending gentle hugs,
    Stay safe

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    • #3
      Thank you for taking the time to share. I have gained hope and strength from you. Your willingness, inspite of your own personal difficulties, to reach out to us is beautiful and amazing.

      Praying for the cure