Announcement

Collapse
No announcement yet.

The Day My Life Changed

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • The Day My Life Changed

    Hello Fellow ICers, I was diagnosed with IC in the winter of 2007. In the fall of 2006, I was experiencing a little back pain. I went to general practitioner and was given Bactrim for a UTI. Within two days, I was in extraordinary pain and constant frequency. I went to my OBGYN many times, but to no avail. After 4 months of constant burning and pain, the pain just went away.
    I decided to go back to teaching after being home with my kids. Two days before Christmas break in 2007, I was sitting at my desk and started to feel that extraordianry pain. I had been eating a lot of fresh pineapple and Vitamin C drops to ward off colds, since it had been awhile since I had been around a room full of students. I was finally able to get in with a urologist who specializes in women's issues in February. I was given the dreaded news. You have Interstitial Cystitis. I had read about this illness on the internet over Christmas, but decided this couldn't be me. My worst nighttmare came true. I immediately changed to a strict diet. I did not see any improvement for quite some time. I suffered through the rest of the school year. I spent the next three years having more bad days than good. Finally, in the summer of 2010, I had some relief. I was able to get through the summer with minimal pain and frequency. Unfortunately, two days before the start of school in 2010, I went back into a terrible flare. I am still having that flare.
    I have deduced over time that my flares seem directly related to anxiety or a chemical imbalance. My bladder can feel pretty good and sometimes almost normal, but I feel anxious and have a hard time concentrating. In a split second, I can feel immediate changes. I will feel wonderful and calm, but my bladder will start burning and hurting with frequency and now some leaking. I can't seem to find anyone to help me with this. I am unable to tolerate anti-depressants and anti-anxiety medicines. I am trying to figure out what is happening to cause this instantaneous switch in symptoms. I am currently taking Prelief and Detrol as needed. I do a relief instillation of Lidocaine at home every so often, but seem to get a UTI almost every time even though I do everything I can to stay sterile.
    I try very hard to find the positive in IC, but this is a struggle. IC has helped me to become stronger in my faith. I am seriously considering giving up teaching since this flare just won't stop. Teaching and my children are my life. I don't want to give it up, but I am tired of hurting. I am curious if there is anyone out whose IC seems directly related to stress and possibly a chemical imbalance. I tried Elmiron, but had to throw that stuff away after the first pill. I just recently tried Aloe capsules, but found that my frequency worsened. I am very sensitive to medicines. I only wish I could find one "miracle pill." I know I seem a little negative, but it has been a hard five months.

  • #2
    Im sorry to hear what u are going through. I know that sometimes it feels hopeless but dont give up on hope. I just started elmiron and im going to start getting dmso treatments. so far no side effects from the elmiron. is that why you threw yours out cause of the side effects? Have you tried other therapies such as atarax,elavil,neurontin, or the IC diet? D-mannose I hear is good at preventing bladder infections and is bladder friendly.
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

    Comment


    • #3
      Hi there ,
      I'm also a teacher! And yes, teaching with IC is really hard.

      A few things...
      Elavil helps me enormously even though I don't tolerate any other anti-depressant well. A very low dose has reduced my pain & greatly improved my ability to sleep. A bonus is that it seems to help with anxiety & panic attacks, which I also have.

      I do instillations every night & many mornings. I found Lidocaine burns, but Marcaine lasts longer & does not burn. I also have had trouble with recurrent UTI's but I recently started taking Pen VK, a low dose antibiotic and so far, no more infections.

      Muscle relaxants taken at night (low dose generic flexeril) have helped. I have physical therapy home exercises to do which keep my pelvic floor muscles from cramping due to stress. I also have pain medication to take when I need it, it's Darvocet, which I will eventually have to stop now that the FDA has halted its use in the US. My doctor & I are going to have to figure out what to do about pain this Spring.

      Stress management is vital to IC treatment. A flare can cut right through my medications & diet if I'm stressed out or upset. In fact, I went through the stress-flare-from-hell this Fall when I took on way too much, got 3 new administrators (sadly, nothing new to my school - we've had 7 principals & 27 vice principals in the last 5 years), and had some family issues as well.

      So, to be ok, for now-- I have to keep my work hours reasonable, say "no" to extras I just can't take on. As much as possible, I have to avoid people, places & things that upset me. Most of the time this works, but when I'm stressed, the first place I'll feel it is in my IC symptoms.

      Feel free to ask any questions you need to or to private message me. I've been teaching for 19 years, 7 of which I've had IC...

      Wishing you relief soon,
      Kadi

      -------------------------------------------------------------
      I am not a medical authority nor do I offer medical advice. In all cases, 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.
      ------------------------------------------------------


      New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
      Source - Pinterest
      "


      Current treatments:
      -IC diet
      -Elavil 50mg at night
      -Continuous use birth control pills (4-5 periods/year)
      -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
      -Pyridium if needed,
      -Pain medicine at bedtime daily, as needed during the day several times per week
      -Antibiotic when doing an instillation to prevent UTI
      -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
      -Dye Free Benadryl 50 mg at bedtime
      -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
      -Managing stress= VERY important!
      -Fur therapy: Hugging the cat!

      Comment


      • #4
        Thanks for the message. I gave up Elmiron because of the side effects. Within a few hours, I truly thought I would lose my mind. Glad you're not having side effects to the Elmiron. I was really hoping Elmiron would do the trick. I am currently using Detrol, Pyridium and faithfully on the IC diet. I just started the Atarax back.

        Comment


        • #5
          I hope to not give up teaching yet. It seems that Elavil is helping or has helped everyone that responded. I hope to get brave enough to give it a try. Thanks!

          Comment


          • #6
            Hi Spelt,
            I can't take Elmiron either, it actually made my IC worse. Very disappointing, but I've found other things that work...
            Kadi

            -------------------------------------------------------------
            I am not a medical authority nor do I offer medical advice. In all cases, 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.
            ------------------------------------------------------


            New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
            Source - Pinterest
            "


            Current treatments:
            -IC diet
            -Elavil 50mg at night
            -Continuous use birth control pills (4-5 periods/year)
            -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
            -Pyridium if needed,
            -Pain medicine at bedtime daily, as needed during the day several times per week
            -Antibiotic when doing an instillation to prevent UTI
            -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
            -Dye Free Benadryl 50 mg at bedtime
            -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
            -Managing stress= VERY important!
            -Fur therapy: Hugging the cat!

            Comment


            • #7
              Sorry Spelt

              Gosh the last thing this country needs is to lose a good teacher who loves her job. Can you maybe do special needs kids so it's like one on one? Or home tutoring in your own home? That would only be a few hours a day. Don't give up yet.

              Will tell you that marshmallow root tea is a wonder, Bob drinks it all day long, just make it in a coffee pot. He takes his with a spot of honey and cream and finds it very soothing. Just thinking of something you can have in the classroom in a thermos. Elmiron does not work for all, but saves many. Bob had a bad reaction as well. There are so very many combos of stuff, it is a difficult process to go through, but a lot of folks get relief when they find it.

              Wish you much luck in your search for a solution. You are halfway through the school year! And yes indeed, stress is a factor. Take care, Jill, wife of Bob

              Comment


              • #8
                My Daughter who does not have IC is sick all the time. She is a teacher. When school is out she seems to be well. It has crossed my mind that the school is "sick" Mildew and or something there that is making her ill. Just a thought. Few people understnd just how stressful being a teacher can be. Stress for me can throw me into a flare in a New York second. Just curious, why did you stop Elmiron after just one pill? I'm sorry you are dealing with this. We need every good teacher we can find. Hugs, Ziggy

                Comment


                • #9
                  There are many, many treatment options available. Given that you love teaching, I encourage you to not give up. I know Kadi was having a very difficult time a year or so ago --- and she is doing much better now and teaching.

                  I know that our best teachers are those who love it.

                  Warm hugs,
                  Donna
                  Stay safe


                  Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                  Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                  Have you checked the ICN Shop?
                  Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                  Patient Help: http://www.ic-network.com/patientlinks.html

                  Sub-types https://www.ic-network.com/five-pote...markably-well/

                  Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

                  AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

                  I am not a medical authority nor do I offer medical advice. In all cases, 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.
                  [3MG]

                  Anyone who says something is foolproof hasn't met a determined fool

                  Comment


                  • #10
                    Thanks for the advice. Almost the end of the week. I am trying to figure out how I am going to get to my daughter's AWAY basketball game tomorrrow. I can deal with the pain, but the spasms with frequency are driving me crazy. I hate spasms!!! Still teaching. Just taking one baby step at a time. Praying for anything better than this. I stopped taking the Elmiron after one pill because my heart began pounding out of my chest and I felt like I was crawling out of my skin. As soon as the medicine got out of my system, I was fine. I don't want IC, but I definitely didn't want Elmiron. Glad it helps many out there. Keeping with the Pyridium, Detrol, and Atarax. Going to make an appointment with doctor to get a script for Elavil. I'm glad I joined the "support forum message boards." Thanks to all!

                    Comment


                    • #11
                      Ic

                      When I feel stressed I try to lay down if possible and take in deep breaths from my mouth and exhale from my nose.I am not on elmiron uro took me off, I have dmso treatment if I go into a bad flare. Has your uro suggesed rescue treatments?
                      <center>
                      <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
                      </center>

                      Comment

                      Working...
                      X