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  • Diet support system

    Does anyone see an dietitian or nutritionist to help stick to an IC diet? I have struggled with the IC diet for over 3 years now. My nurse is working with me to plan my diet so I stick to it. I am so terrible at eating/drinking the wrong things...sometimes on purpose in large amounts just because I don't care anymore. I get in a "my bladder is damaged anyhow so just drink an extra large coffee" mood. Anyone else have this issue or just me?
    Interstitial Cystitis: Elmiron and Hydroxyzine
    Depression/Anxiety: Remeron, Cipralex and Clonazepam

    *tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
    * 2 hydrodistentions :

    * currently on "Nabilone" for pain management

    Taken the following:
    Gabapentin no relief but could tolerate it
    Lyricano relief but could tolerate it
    Cymbalta severe depression/anxiety etc.
    Topamax severe nausea and weight loss
    Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation

    What helps IC: yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture

    Other conditions...
    Vulvadynia (amytriptaline cream - no longer using to to irritation)
    Severe IBS
    Chronic Sinus pain (nasal rinse as need)
    Migraines
    Lower back and sacroiliac joint disfunction

    Allergies: Erythromycin, scents and detergents

  • #2
    If you can find a nutritionist who will work closely with you on the diet, that can really help. Some are good about it, others are not & are just a waste of time & money. I've printed out the diet & mailed it to the nutritionist before the first appointment, since most are not aware of the diet. At the first appointment, I can tell pretty fast if they bothered to read it or not and how seriously they take helping me.

    Actually, what I found that helped me most with the diet was printing out a copy of the tricolumn list & taping it to the fridge, crossing off anything that spiked my symptoms. Over time, I figured out my trigger foods and don't really even think about them anymore.

    Honestly, no- I never really blew off the diet once I started it, but my IC would probably be called severe. If I eat trigger foods, I lose too much - days of work, time spent with friends & family, exercise, church, travel, sleep. The cost for me to just eat whatever, is too high, because I value the quality of my days more than anything I put in my mouth.

    Another thing that helped me with the diet was something someone else posted here: the diet is a loving way for you to take care of yourself. It doesn't depend on doctors, there's no insurance copay or hassle, it doesn't cost extra, and you're not going to develop an unpleasant side effect from it, like can happen with medications.

    It also supports you to get better help from your doctors. If you need pain management or further treatment to reduce your symptoms, you're more likely to get it if the doctor knows you're trying your best to manage it with lower level interventions, like diet, stress reduction, etc.

    No one is very sure if eating trigger foods causes more damage to the bladder or if it's just a temporary unpleasant flare it causes, but I'd personally rather not risk my IC getting worse. It's awful enough already!

    I'm not sure my answer is what you're looking for, but I'd rather encourage you to be strong and proactive to move towards living the fullest life you can with IC, rather than to give up and perhaps suffer more.

    Food is great, I still love it. I use lots of different recipes, both from the cookbooks for sale here at the ICN shop, and also from Dan Norton's "My food style" website - IC recipe subscription service. It's totally worth the $4.99 per month to get new recipes every week that are designed just for us and are as good as you'd get in a restaurant.

    Hope that helps a bit,
    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!

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    • #3
      Another thing (which helps me more than anything) is to plan meals ahead. It also helps with the grocery shopping, which is an added benefit.


      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

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