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  • living with IC

    I have a horrible disease, termed interstitial cystitis, that makes me question on a daily basis whether or not I can continue. I have two young daughters- one one, one three, and a remarkable husband. Very few people know about my disease, as the nature of it (at least until this point, 1+ years) is so chronic that keeping it from friends and relatives also safeguards my sanity- I am living it 24/7 and my only escape is in the company of friends, where symptoms seem to subside, only to rise up again in the absence of distraction.

    The things I used to enjoy to no end- walking, reveling in sunsets and sunrises, listening to Willie Nelson and the Beatles, taking vacations with my husband, greeting the new day with a sense of optimism and possibility- no longer excite me. I wake up and steel myself against what is to follow. It is not pessimism; I have felt, with very few exceptions, the same horrible feeling in my body for 12 months now.

    I am atypical: it is unusual to have this particular disease to this degree. There are certain factors that contribute to my extreme plight- so little is understood about the female urinary tract, and for a certain period of time I was misdiagnosed and mismanaged, not to mention pregnant. Nonetheless, here I am, suffering to an unreasonable degree, and what can be done?

    IC has the unique distinction of being a symptomatic disease: from an objective viewpoint there is nothing wrong with the bladder, but its sensors are completely out of whack, and signal that it’s time to go even when there’s nothing there. When it’s not urgency that I’m feeling it is discomfort and pain. In some ways it's worse when it’s empty, because I am unable to attribute my feeling of discomfort to a reasonable cause.

    In the past year I have undergone general anesthesia four times, in each instance hoping that the given procedure would impact my symptoms. With the more invasive procedures I was given a 50- 70% chance of success. Each time there was a 2-3 week window in which the therapy was likely to succeed, and with the realization of each failure I fell into a deep despair.

    People who endure great emotional or physical hardship are often commended for their bravery, but really they are not exceptional; rather, the norm is that we will plow ahead and pray (yes, pray) for better days, continually striving to put our own plight in perspective and strike the delicate balance between entitled and humbled, empowered and victimized. Every second of how we life our lives matters.

  • #2
    Are you on any medications for IC? Are you following an IC diet? Have you tried bladder instillations? Hydrodistention?

    My IC was diagnosed 36 years ago in 1975. It did take time for me to find the most effective treatment options and to identify my food triggers. At the time I was diagnosed not much thought had been given to a food connection so that took many months. Interestingly, all of my triggers are listed in the foods to approach with caution.

    I know it seems like forever, but most of us do find effective treatments and we do feel better.

    Sending warm healing thoughts,
    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


    • #3
      living with IC

      Lola,
      The sunsets are still there. Keep watching for them.
      Laurie

      Comment


      • #4
        When I first got IC 8 years ago, I was voiding 60x a day, completely unable to sleep, wear jeans, exercise, attend church, travel. Working full time was very difficult and looking back now, I realize that if I hadn't found the treatments I use now, I would have lost my career. The laparoscopy and hydrodistension I had did not do anything for my symptoms. I was especially upset I could not take Atarax (gave me a pounding heartbeat) and Elmiron (made my IC worse) and wondered if I'd ever be ok again.

        But, today with the treatments listed below my name, I feel well most of the time, I work full-time without trouble, I wear jeans every day, exercise (when I'm not too lazy which is a different issue), attend church, and travel. I still have some IC symptoms, but not disabling.

        It takes awhile to find the right combination of diet, exercise, medications, stress management, to get the IC managed, but the vast majority of IC patients do get better and resume more "normal" lives.
        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


        • #5
          I am where you are to. Don't feel like you are alone. I was diagnosed w/IC a year ago as well. My children are grown and I am divorced. I have a fulltime job that is unforgiving and is suffering b/c of my condition with my 10 to 15 minute bathroom breaks several times a day I problems voiding as well. I had the InterStim Implant put in my body in January of this year with the hope and expectations that it was going to help me and make my IC better but it hasn't.

          I do watch my diet and take all kinds of bladder medications and bladder cocktails and it is still there. With every new flare the pain is worse and is longer and you think is this ever gonna end????? So, my friend your not alone. Just try every day to pull yourself up and get through it anyway you can.

          Comment


          • #6
            I agree with donna try every treatment possible. we understand what you are going through you just have to find what works for you.
            <center>
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            </center>

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            • #7
              Thanks for all of the understanding replies. I know that many of you have found things that work after prolonged periods of suffering... I guess that the reason I am so desperate is because I really have tried almost everything. The ICA put out "guidelines" that were published by the AUA, and essentially I've tried everything that the experts recommend, with the exception of cyclosporine, which scares me. (diet, every possible medication, hydrodistention, various bladder instillations, interstim, botox, etc.) It's not fair to say that nothing has worked- I'm better off now than I was when things elevated to this intensity- but in no way do I feel like I'm comfortable with the level of discomfort that I face day in and day out. Bladder removal has certainly been a consideration, I'm just not there quite yet. Thanks for all of the support, it's nice to know that others have felt the way I do, and I'm glad that some of you have found relief! We'll all get there some day!

              Comment


              • #8
                p.s. Kadi- do the daily instillations really help you to a measurable degree? I benefitted for about 1 week after 6 weekly heparin/lidocaine/bicarbonate instillations, but then saw no benefit from the remaining 4 (except from the lidocaine while it was in). My urogyn said continuing that therapy would be like a "shot in the dark." How did you come to your current treatment plan?

                Comment


                • #9
                  It was a discussion between myself and the IC specialist urologist.

                  I told him I did not understand why my former DMSO cocktail instillations burned less than the Lidocaine/Heparin/Sod Bicarbonate "rescue" ones when the DMSO ones are known to be irritating. I thought it might be the Marcaine in the DMSO cocktail was stronger than the Lidocaine & I asked the doctor if I could try Marcaine in the home rescue instillations instead of Lidocaine. He said he didn't think it would help any - but I asked him to try it anyway, because I could tell my body reacted differently to them. The Marcaine worked better immediately! I was so relieved....

                  I started out at twice a week at night but it wasn't nearly enough- so we tried daily, but I still struggled through my work days (they wore off by midday) and that's when the urologist and I decided on twice a day. That has been my miracle. These instillations have given me back a decent quality of life and saved my career. I am glad I didn't just take the doctor's first answer at face value, but listened to my own body and pushed to try the instillations differently.

                  There are many formulas for rescue instillations out there - the ICA has a list of different IC specialists' instillation formulas. It is amazing to me that so many doctors just try their one formula and then if it's not enough, decide that "instillations" failed, rather than adjusting them or trying what other doctors prescribe for their patients.

                  Wishing you better days 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


                  • #10
                    Thanks for the infoi, I know what you mean about doctors thinking you have failed "instillations" when there are so many of them. It's great that you have found a dosage that works for you, it's definitely something I may end up trying myself. Is it a major pain getting all the supplies that you need for that many home instillations? I just remember running all over the place to make sure I had enough for my once weekly ones...

                    p.s. to what degree to you think that the marcaine is the predominant factor in your feeling better? I know the lidocaine feels soooo good for the duration that it is in, but once it's out (2 hours later) I'm back to square one.

                    Comment

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