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  • Crazy Restricted Diet and Still Flaring!

    Ok, I'm at my wit's end. Is it possible the IC DIET is meaningless for some people?? I have been on the strict IC diet since February, and have not quite been sure yet if it was helping me, but I've been persevering. Just last week, I added a "yeast-free" diet on TOP of that at the behest of my new acupuncturist. She said with all the rounds of antibiotics I took in fall and winter, I probably have a candida infection. So ten days ago, I cut out all sugars, products high in sugar (like pure carrot juice, pears, dates, honey, sweetened almond milk etc.) and gluten. And I've gotten worse.

    Now, I'm flaring as badly as I was when this whole thing started back in February. How is this even POSSIBLE??? Back in february I was drinking alcohol, coffee and juices, and eating spicy foods, chocolate, soy, etc and not taking amitriptiline! In February and March, when my symptoms were the worst, I was peeing every 20 mins and in unbearable pain. The amitriptiline and, I assumed, the diet helped me to only have to go every 45mins-1hour and lessen my pain, but I have yet to feel in a position where I could "introduce" foods back into my diet because I'm still 'flaring." But the difference in lifestyle between peeing 3xs an hour and 1x and hour is HUGE. You can do SO much more in life when you have to pee less, right? :-) But as I said above, I still had pain and frequency every day so I didn't consider my flare over, and I've been continuing to seek treatments.

    Two weeks ago, I tried some Desert Harvest aloe and I felt that it caused more pain and frequency. Then a few days later, I saw this acupuncturist for the first time and she gave me herbs. This woman apparently cured a friend of mine from IC and so I trusted her. I took all the herbs as she instructed for one day after our meeting, but that night and the next morning, I felt much worse, and I attributed it to the herbs and immediately stopped them. For the last week, I have been rigidly following my no-sugar and no-gluten IC diet, and I have gotten WORSE this week, especially in the last two days, to the point where I am now flaring as badly as I was back in February, although I'm eating this pure diet and still taking the amitriptiline.

    I just don't understand how this is possible!!! I feel like the diet must be doing NOTHING for me, even though I believe whole-heartedly in the science behind the diet. Even if something I am unknowingly doing is causing me to flare, how can it be as bad as it was when I was eating so much food that was bad for my bladder? I just had complete faith that when I cut out coffee and alcohol I would experience a huge change but I didn't. Then I went on the complete diet, believing it would HAVE to get a little better, but it really didn't, even after three months. Now I've cut out all the last foods that I loved while on the IC diet, pears, dates, carrot juice etc, and I am WORSE. I can't even describe my disappointment and confusion. I just can't believe I could be this bad off again after everything I've been doing.
    IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
    Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
    Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

    Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
    Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
    Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
    Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

  • #2
    Hi Dani,
    The diet helps me, but I still need a lot of medical treatments to manage my IC. Without the diet, though, the treatments don't work. I'm noticing that your dose of Elavil is very low. Many IC patients take up to 60mg of Elavil for relief. I found that 20 mg of Elavil works much better for me than 10. Unfortunately, for me, I got too hungry on 30 mg of Elavil, so I couldn't raise my dosage above 20. I do home instillations of 20,000units of heparin, 10cc marcaine, 5cc sodium bicarbonate, 30cc sterile water. I do these twice a day and they've given me my life back. I also did physical therapy and muscle relaxants and that reduced the cramping and pelvic pain also.
    I hope you find relief soon. There are more treatments out there, you just have to find the right combination for you. Hang in there,
    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


    • #3
      PS. I just noticed your note about not having health insurance. I'd talk with your doctor about increasing the Elavil first. The generic form of Elavil is very inexpensive, especially compared to Elmiron & instillations.
      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
        Are you still taking Aleve? I know I can't tolerate anti-inflammatory medications, including Aleve.

        You might try keeping a diary for a while to see if you can identify any triggers. I do understand how frustrated you are feeling.

        Warm hugs,
        Donna
        Stay safe


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        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


        • #5
          Flares

          Thank you Donna and Kadi for responding!! That was definitely a huge rant for me.

          Kadi- I was initially prescribed a much higher dose of Elavil but it makes me feel like a zombie. It makes it hard to get out of bed in the morning- like a have a hangover. I started taking my small amount at 7pm every night and it helps a little. I want to take more to help my IC, but I'm afraid to up the dose because of the tiredness and also the dry mouth that makes speech difficult. Do these side-affects get better with time? Also, I think I'm going to check with the urologist about the costs of instills and learning to do them at home. Your post just gave me more encouragement to do that.

          Donna- A friend of mine with IC said that anti-inflammatory drugs irritated her too. I just have such a hard time detecting my triggers. When I feel worse, I don't know if its from something I did earlier in the day or earlier in the week. It always seems like there are always a few things that could be the cause of flares and of feeling better so I never for sure what the cause is.
          IC symptoms since Dec. 12 2010 after confirmed bladder infection "never went away." Recently also diagnosed with PCOS, piriformis syndrome, and pelvic floor dysfunction, sinus issues. I was in great health before fall 2010.
          Current medications: citalopram 40 mg, valium 2.5 mgs a night, lidocaine patch (for back pain), Prelief
          Therapies tried or continuing: stretches, walks, baths, internal massage, physical therapy, IC diet, IF unit, heating pad, mindfulness based stress reduction classes, cognitive therapy, books on IC and pelvic pain...

          Drugs Tried: the urinary analgesics, 4 kinds of muscle relaxants (including in suppository form), hydroxyzine, 3 kinds of TCA's, lyrica, cymbalta, 6 months elmiron, vesicare, antibiotics, prednisone (after sinus surgery), NSAIDS...
          Supplements: over 20 herbs and supplements, including regimens from TCM practitioner and a naturopathic MD
          Intravesical/Surgical: 3 instills of Uracyst, 2 “rescue instills” lidocaine, bicarb, elmiron; 1 self-instill of marcaine, a steroid, bicarb and heparin; 1 hydrodistention and capsaicin instill (made me worse, still recovering two months later...)
          Other: Acupuncture treatments, magnets (LOL), Anti-Candida Diet (2 months), Wheat free diet, water pH

          Comment


          • #6
            Hi Dani,
            For me, the side effects from the Elavil got better after several weeks on it. Initially when I took it - even just 10mg, it knocked me flat - I'd take it at 7:30pm and would have to set the alarm for 45 minutes earlier wakeup time (5:30am) so I'd have that time to shake off the morning grogginess and be able to drive safely at 7am. Now, I don't get sleepy from it at all. My doctor also suggested taking it in 2 doses - one at 7pm and the next at 8:00pm. He said some patients get less side effects that way. It wasn't an issue for me, since the 30mg made me so hungry I couldn't sleep - so I didn't take it long enough to know.

            I remember very well the frustration and despair I felt that first year with IC when I was going through the figuring-it-out-phase. It gets better once you get your treatment plan established. My quality of life is pretty good now, though I was very very sick when I first got IC. I'm just telling you that to give you hope. Your post reminded me very much of my first year.

            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


            • #7
              Have you tried Atarax or any of the other antihistamines? I had much success with just Benadryl because I couldn't take Atarax.

              Comment


              • #8
                I was on the diet and meds for a year before my symptoms were under control enough for me to tell which foods were triggers. It took that long for me to get my bladder calmed down. I wouldn't give up on it yet.

                Comment


                • #9
                  Dani.I would suggest starting a food and meds journal and also record your symptoms as they occur. Eventually you should start noticing a pattern and find what your triggers are. Many of my triggers were in some of the meds I took....such as dyes and citric acid being in some of them. Good luck.Jo

                  Comment


                  • #10
                    I was going to post what earthlady did: ask your doctor for a prescription for Atarax. It is available in a generic.

                    Have you ever tried the Over Active Bladder meds (OABs)? The first two drugs my uro treated me with were Ditropan XL (there is a generic) and Tofranil. Later on, at my requst, he prescribed Atarax for me. Atarax will help your body fight the mast cells that occur in many IC bladders.

                    Comment


                    • #11
                      I don't know if your flaring follows a pattern, but maybe in addition to everything else you are one of those individuals who are also hormone sensitive. My IC is relatively under control, but I still get mini flares every month at "that time" of the month even if strictly following the diet. Since yours is not under control perhaps that is another thing to consider.

                      Comment


                      • #12
                        Originally posted by surprisedx View Post
                        I don't know if your flaring follows a pattern, but maybe in addition to everything else you are one of those individuals who are also hormone sensitive. My IC is relatively under control, but I still get mini flares every month at "that time" of the month even if strictly following the diet. Since yours is not under control perhaps that is another thing to consider.
                        Absolutely. Food is definitely not the only thing that causes a flare. Many things do. And even then, sometimes a flare just is, with no specific cause.

                        Comment


                        • #13
                          Dani, have you tried Atarax or had some allergy testing done? I wonder if you have some allergies to some of the foods you are eating.

                          Stress management is also a good option.

                          I know it is frustrating.....but eventually, you will get better.....most everyone does..........

                          Sending you understanding hugs......

                          Julie
                          Julie Beyer, MA, RDN
                          IC Dietitian, Patient Advocate, Speaker, & Author


                          Did you know that up to 94% of interstitial cystitis patients find some symptom relief when they change their diet, and that dietary modification is recommended as a first line treatment for IC? Check out the IC Food List to get started!

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                          You can also learn more while supporting the ICN message boards by clicking on these book covers and buying the Confident Choices books from the ICN Store:

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                          Free IC Diet Booklet: What Can I Eat?
                          Confident Choices IC Diet Blog
                          IC Diet Newsletter


                          *Let's Connect!*

                          Comment


                          • #14
                            I felt this way too. I was on the diet for years and never improved. I actually got worse and worse and ate less and less. Some people are NOT diet sensitive, and sometimes it is something else entirely. For me it was the color of my birth control pills (yellow) causing the biggest problem. This could be true of any color you are ingesting. I also have PFD much worse than I thought, so that could be an issue too. The pelvic floor flares the bladder. Since PT and switching my BC my bladder has calmed down quite a bit. Still some pain, but less. I am still very careful about what I eat, but I do notice that if I slip up I don't suffer as much. I still cannot have wheat flour, most people can tolerate it but I can't. Or corn or any kind of whole grains, unfortunately, because they are all healthy, oh and no brown rice! So it could also be you are eating something you think is ok and it is not. good luck, this is a very long and arduous journey.

                            Comment


                            • #15
                              Sorry

                              I add my sympathy to everyone elses for you in your situation. It might just take some time for your body to heal.
                              I had been taking herbs and such from a Natural Doctor before I had IC. I have another condition she was treating. Since, I have the IC I haven't gone back to take any herbs as I don't think they would be safe. I haven't wanted to risk having a flare. Sometimes one cure causes another problem.
                              Hang in there. Hope you get better.

                              Comment

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