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  • Food and IC...some analogies

    Are you new to this IC and diet thing? Are you getting overwhelmed with trying to figure out what you can or cannot eat?

    You aren't alone. Many people get frustrated about diet and often find themselves in a negative cycle of fixating on the foods they can't have. I know I was bad at first...thinking that here I was, having to give up so much of my life, and now I can't even have spaghetti or orange juice?

    Diet does help though, and it is one of the things we have in our control. The one thing that helped turn my head around was to realize that eventually everyone "gets" something. Some have arthritis, some have diabetes, some have even worse diseases like cancer. IC is our "thing." Also, if you asked ten people on the street if they are supposed to be watching their diet in some way, nine out of ten would say yes....and the last one is lying.

    The good news is that an individual's IC diet usually doesn't have to be as strict as you may think. Most IC patients find that they can have a substantial and healthy diet if they do a little detective work to identify their personal trigger foods. That is the idea of the elimination diet. Most people do not have to be on the most restrictive diet forever. And, although other IC patients are great counsel, your diet is probably not going to look like anyone else's.

    One thing to keep in mind is that diet is rarely a treatment that is successful all alone. Most IC patients will take some medications, and often multiple medications in addition to making lifestyle changes such as diet modification and stress management. BUT....my observations tell me that diet can ALWAYS help other treatments work better.

    Think about when you were a kid and got a skinned knee. What happened next? Most likely, you or someone else washed it then put a bandaid and maybe some antibiotic cream on it. You would give it some time to heal. But what if, once a day, you took off the bandaid and scrapped some sand paper across the wound on your knee? It would take MUCH longer to heal, right?

    If we eat IC trigger foods, we are compromising and possible undoing all of the good our medications are working so hard to do for us. In fact, I am willing to bet that if people watch what they eat while they take Elmiron, that the medication will have a much higher success rate...just an educated guess! Who wouldn't want to give our bladders a chance to rebuild its lining?

    Also, treatments for IC, including diet, take time to work. It may seem depressing now, but it can take months or even years to feel better. If you are suffering now, it is important to keep that hope alive. You WILL eventually feel better; hundreds of us here at ICN are living proof of that, but you have to be patient and really take some time to help yourself.

    The other thing to keep in mind with IC and diet is that so many many other things can make your bladder fussy. Stress is a huge irritant. You know when the docs said it was all in our heads? Well, I hate to admit it, but they were partially right! A good part of IC IS in our heads...........but that doesn't mean we are lying or making it up. The chemicals that are released in our bodies when we are under stress are very powerful, and very caustic to the bladder. There are times when I am perfectly fine, then some stressful thing will happen and I am doubled over in pain. It is that quick. (Most of you know what I am talking about!)

    So, if diet doesn't seem to be working, maybe other aspects of our livestyles are flipping our bladders out, and the diet isn't getting a chance to work just yet. Having a chronic disease is stressful in itself! Who wouldn't be stressed running to the doctor all the time, trying to please your family, trying to figure out meds and a new diet, all while trying to keep up with the Jones? And let's not forget the other thing that is easy to deny. Sex....(You may want to visit the "When Sex Hurts" board listed in the left column of the message boards.)

    The lesson here is that even if the diet doesn't "seem" to be working for you, it most likely is, but the effects are being overrun by the rest of your life. It goes back to what I said a bit ago--most IC patients eventually settle on a few different therapies to get their bodies back in some sense of order.

    So, if you are new....hang in there........ask questions........be your own best health care provider. Keep a diary or a calendar. Write down what you eat, what is going on in your life, the medications you are trying, and how you are feeling. If you can't figure it out, share your diary with a trusted friend or your doctor. Sometimes we are too close to a situation to see what may be hurting us.

    I wish I could hug each of you who are still hurting and trying to figure all of this out. You CAN do it, you CAN get better, you CAN begin to heal.....it just takes some time and patience.
    Last edited by Julie B; 08-01-2007, 08:40 PM.
    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!

    Do you need a little more help understanding the IC Diet? Schedule a phone or video coaching session through the ICN Store today.

    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:

    ........ ........


    Other IC Diet Resources:

    IC Diet Webinar
    IC Diet Website
    For Health Professionals: Continuing Education About Interstitial Cystitis and Diet
    Free IC Diet Booklet: What Can I Eat?
    Confident Choices IC Diet Blog
    IC Diet Newsletter


    *Let's Connect!*


  • #2
    thanx

    Julie,
    Thank you so much for this post!! I've been losing hope lately. I'm afraid I won't be able to afford to alter my diet enough to do any good. We make just enough that we don't qualify for food assistance so grocery shopping is tight. Thanks again for offering me hope.
    Jamey

    dx
    IC, endometriosis, cervical dysplasia, bi-polar, trichotillomania (hair pulling disorder), scoliosis, fibroid breast disorder, chronic fatigue, arthritis in hands, temporal lobe seizures
    meds
    buspar 30mg, atarax 100mg, norco 10mg 30/week for pain, vimpat 100mg 2/day, trileptal 600mg 2/day
    flare strategyestrace cream, lidocaine jelly, and ice pack on urethra. ativan .5mg for severe flares only

    Life's not about waiting for the storm to pass. It's about learning to dance in the rain.
    (and looking for rainbows)

    Comment


    • #3
      Hi Julie, thank you so much for your posting.. it did lift my spirits! I was wondering if you have any suggestions as far as alternatives to stimulants go.... I'm talking about tea, coffee, energy drinks -- obviously, all of them are out of the picture now that I have IC (and they are big triggers for me!), but I still have to get up at 6am, take my daughter to school and go through a full day somehow ANY ADVICE WOULD HELP! Thank you!

      Comment


      • #4
        Thanks

        Julie,

        Thank you for that encouaragement. It means so much just to know that someone else has been through this and has successfully managed her symptoms. You have given me more hope than you know.

        Carissa

        Comment


        • #5
          Hi Jamey,
          The IC diet can be bad for the budget, but it all depends on what you spend the money on. If you go to a specialty store like Whole Foods, yes, that can break the bank (I like to call it Whole Paycheck Market).

          BUT, if you shop the perimeter of regular grocery stores (like Safeway or Albertsons) it is possible to be on the IC diet without running up a big cash register receipt. That means shopping along the walls of the store (produce, meats, dairy) & not going into the aisles much, mainly just for TP, cleaning supplies.

          I buy very little pre-packaged food ("aisle" food), which is marked up by a lot! I make my own cookies or muffins, which costs less than buying them already prepared. Breakfasts for me are a muffin, or cottage cheese/pear/homemade granola, or an egg & toast. Nothing costly there.

          Lunch for me can be a soup made from vegetables, & a baked potato with butter or homemade muffin. Or I microwave leftovers from dinner. If I make sandwiches, that costs a bit more because of buying preservative free lunch meats, it's around $3 a week more than what I bought before. But since I'm not buying chips or prepackaged cookies, or sodas, it's evened out.

          To save money on dinners, I make a giant potroast, stew or soup in the crockpot & portion it into tupperwares. I do "batch cooking" where I buy larger quantities of meat on sale, cook them into recipes & freeze for later use.

          I've found my grocery bill is about the same or less than it was prior to IC and I follow the diet more strictly than most. It sounds like I'm cooking all the time, but I'm not. I do batch cooking maybe twice a month & rarely cook during the work week. I pack lunches two days at a time to save time also.

          Just a few ideas...
          (The diet is really important for me because none of my medicines work unless I'm following the diet.)
          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


          • #6
            kadi you always have the BEST food posts!!! i love it, thanks. just had to tell you that.
            (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

            Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

            I'd like to be on House, MD as a medical mystery.

            Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

            Connor & Mommy by the tree:


            Connor with Santa...so happy!


            I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

            Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

            I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

            Comment


            • #7
              Kadi - great ideas - since I have a hard time standing up long enough to cook that much, maybe i can get my kids or my husband to help me cook a bunch of things on the weekend like that. I do have a vacuum sealer for foods so that would work nicely.

              and Julie, I'm printing your post out, framing it, and hanging it in my kitchen!
              Thanks for the encouragement!
              clouddrifter

              hysterectomy oct 2006 for endometriosis,cystoscopy at same time dx'd w/IC,Pelvic Floor Therapy w/biofeedback for PFD dx'd May 07,Vulvodynia dx'd April 07 (suffered thru 20 years & many doctors with this til dx'd), IBS dx'd May 07,
              Known Food Allergies: dx'd 10-02-07 - corn, soybean, rice, yeast, chicken
              Also just dxd with allergies to all trees, grasses, molds, pollen, cats, my two dogs, and candida albicans. All allergies in the 3-4+ range

              Medications Currently Taking:
              Elmiron 100mg 3 xs daily
              Lortab 5/500 prn
              Premarin .9mg @bedtime
              Allegra 180mg daily
              Benadryl 100mg tabs prn
              Famotidine 40mg 1 x daily
              Vagifem 25mcg tabs 2 xs week
              Diflucan prn
              Chantix

              Comment


              • #8
                Wow I didn't know

                Originally posted by kadi View Post
                Hi Jamey,
                The IC diet can be bad for the budget, but it all depends on what you spend the money on. If you go to a specialty store like Whole Foods, yes, that can break the bank (I like to call it Whole Paycheck Market).

                BUT, if you shop the perimeter of regular grocery stores (like Safeway or Albertsons) it is possible to be on the IC diet without running up a big cash register receipt. That means shopping along the walls of the store (produce, meats, dairy) & not going into the aisles much, mainly just for TP, cleaning supplies.

                I buy very little pre-packaged food ("aisle" food), which is marked up by a lot! I make my own cookies or muffins, which costs less than buying them already prepared. Breakfasts for me are a muffin, or cottage cheese/pear/homemade granola, or an egg & toast. Nothing costly there.

                Lunch for me can be a soup made from vegetables, & a baked potato with butter or homemade muffin. Or I microwave leftovers from dinner. If I make sandwiches, that costs a bit more because of buying preservative free lunch meats, it's around $3 a week more than what I bought before. But since I'm not buying chips or prepackaged cookies, or sodas, it's evened out.

                To save money on dinners, I make a giant potroast, stew or soup in the crockpot & portion it into tupperwares. I do "batch cooking" where I buy larger quantities of meat on sale, cook them into recipes & freeze for later use.

                I've found my grocery bill is about the same or less than it was prior to IC and I follow the diet more strictly than most. It sounds like I'm cooking all the time, but I'm not. I do batch cooking maybe twice a month & rarely cook during the work week. I pack lunches two days at a time to save time also.

                Just a few ideas...
                (The diet is really important for me because none of my medicines work unless I'm following the diet.)
                Thanks-- I didn't know they had preservative free lunch meets. I 've been cooking extra chicken at dinner and using it in my salads.

                Comment


                • #9
                  Hi Jamie, I've been shopping at local vegetable stands and saving a bundle there- of course summer is almost over, but I saved a lot that way. I've also contacted local farmers (I looked for info on the internet) and have been buying local chicken, beef and eggs. It is about the same price as grocery store stuff, but is chemical free and tastes really good. I've also been buying stuff in bulk at the health food store. I compared prices to regular grocery store food. The bulk organic stuff is cheaper then the packaged regular grocery store food. Like others, I'm making everything I eat from scratch. It's a pain and has only helped a little so far, but I think it will help more and more as time goes by. Good luck

                  Comment


                  • #10
                    Stress, adrenaline...

                    It's so true that stress releases some kind of chemicals that are caustic to the bladder. I was fine all day yesterday and then got an angry email from my sister. I was doubled over in IC pain within 20 minutes... probably from the adrenaline or something.
                    Exposure to an unclean hot tub 2-17-07 FIRST UTI
                    (Got ringworm-like sores from it before)
                    (Someone else got what looked like 'eye herpes')
                    (My husband got an ear infection. We were all just sitting there!)
                    SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
                    TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
                    Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
                    CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
                    MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
                    PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD

                    Comment


                    • #11
                      Thank you for an inspiring message. The IC diet has helped me a lot. I've always been a health food fanatic and was wolfing down tofu and soy products thinking they were good for me and never making the connection between when I ate a lot of tofu and when I had bladder pain. Discontinuing tofu alone has made my life liveable again. From my perspective, restricting my diet is a small price to pay for avoiding terrible bladder spasms and burning. I still have symptoms, but they are not terrible.

                      I, too, have an almost immediate bladder response to stress. Keeping my mind calm is my challenge in life. Recently I met a woman who shared with me something she uses to help with her chronic pain. It sounds kind of "out there" but I do it now and it works for me. Before I met her I was always fighting with my bladder. It hurt, I'd tense up, I didn't like it because it wasn't working right - all that negative feeling was making the symptoms worse. My friend suggested loving my bladder instead. (She does this with all of her major organs.) Now every day I take the time, especially when I have pain, to love my bladder. This involves just a few still moments when I close my eyes and direct positive energy/loving thoughts. It's amazing, but for me it causes instant pelvic relaxation which in turn decreases my pain level.

                      Thought I'd share that (at the risk of being considered a kook) in case it can help someone else as it has helped me.

                      barb

                      Comment


                      • #12
                        diet and Chinese and white teas

                        First of all--I can't stand the diet. I can't find anything I like to eat anymore that doesn't kill my bladder. It seems all I can find to eat are fattening carbs. So anyone who wants to share some tips on their daily menus, I would greatly appreciate it.

                        One thing I've found that I do like to eat are roasted carrots with olive oil and rosemary.

                        Also--do you find you can tolerate fried onions as opposed to raw onions?

                        Also, I was drinking hot milk all last week--milk with vanilla syrup, milk with hazelnut syrup, milk with carmel syrup--but now the though of drinking milk makes me want to throw up.

                        Then today I was remembering that it seemed that when I used to go to Chinese restaurants I wasn't peeing every ten minutes after I drank their tea--so I decided to experiment with myself and today I drank a ton of oolong tea--it tastes good and I love the fact that it's not milk. I haven't gone to bed yet--that's always the test--I'll keep everyone posted on my results. But I was wondering--has anyone looked into Chinese tea--apparently they're somewhere between green teas and black teas--whatever that means.

                        Also--has anyone tried white tea--and what is it?

                        Thanks to everyone. I've had IC all my life--before there was name for it--and it's amazing to me to have at long last found other people who go through what I go through.

                        All the best,

                        Maxine

                        Comment


                        • #13
                          Hello to all of you some great tips & advice here thanks to you all Just wanted to ask about bread. I always ate brown breads, granary etc before I was diagnosed with IC. I eat white bread now as I know I'm safe with it .... unfortunatley I find it very constipating :o( I know I could avoid it but find bread at lunch times is filling & convenient! I always eat fresh bread to be sure its got no nasties in it! Was just wondering if anyone has found a friendly bread out there that's not white??? I have experimented with a few but not sure if it's triggering bladder burn???? Still not sure on all the different symtoms etc! Thanks for listening
                          Big hugs
                          xx

                          Comment


                          • #14
                            an incredibly great and easy bread recipe

                            Being as the IC diet is so limited, eating basically has lost all its pleasure for me. I basically just eat to stave off the hunger, since all the things I love--fruit, tomatoes, spices, onions, etc. make my bladder go on the attack. But recently I found this bread recipe which has brought some of the eating fun back into my life. It's great bread--the absolute best--and it takes about five minutes--tops--of labor to make--it just requires a lot of waiting time. I've been living on this bread--it's so nice to have something fun to eat.

                            I eat it with cheese. Lately my bladder has been acting up again--and I'm wondering could it be the cheese--saga blue, I'm wondering, might be the culprit. It couldn't be Monterey Jack or Goat cheese, could it? Also, the other thing I like to eat--or really can bear eating--is yogurt with lots of nuts and raisins. But now I'm thinking the golden raisins--which are the only kind of raisins I like, of course, could be doing it to me. Any suggestions re. dried fruit?

                            Also, please everyone, share your comfort food ideas.



                            Adapted from Jim Lahey, Sullivan Street Bakery
                            Time: About 1½ hours plus 14 to 20 hours’ rising

                            3 cups all-purpose or bread flour, more for dusting
                            ¼ teaspoon instant yeast (I have a lot that I keep in the freezer - let me know if you want some)
                            1¼ teaspoons salt
                            Cornmeal or wheat bran as needed.

                            1. In a large bowl combine flour, yeast and salt. Add 1 5/8 cups water, and stir until blended; dough will be shaggy and sticky. Cover bowl with plastic wrap. Let dough rest at least 12 hours, preferably about 18, at warm room temperature, about 70 degrees.

                            2. Dough is ready when its surface is dotted with bubbles. Lightly flour a work surface and place dough on it; sprinkle it with a little more flour and fold it over on itself once or twice. Cover loosely with plastic wrap and let rest about 15 minutes.

                            3. Using just enough flour to keep dough from sticking to work surface or to your fingers, gently and quickly shape dough into a ball. Generously coat a cotton towel (not terry cloth) with flour, wheat bran or cornmeal; put dough seam side down on towel and dust with more flour, bran or cornmeal. Cover with another cotton towel and let rise for about 2 hours. When it is ready, dough will be more than double in size and will not readily spring back when poked with a finger.

                            4. At least a half-hour before dough is ready, heat oven to 450 degrees. Put a 6- to 8-quart heavy covered pot (cast iron, enamel, Pyrex or ceramic; I've been using an oval 4.5 quart and that works too) in oven as it heats. When dough is ready, carefully remove pot from oven. Slide your hand under towel and turn dough over into pot, seam side up; it may look like a mess, but that is O.K. Shake pan once or twice if dough is unevenly distributed; it will straighten out as it bakes. Cover with lid and bake 30 minutes, then remove lid and bake another 15 to 30 minutes, until loaf is beautifully browned. Cool on a rack.

                            Yield: One 1½-pound loaf.

                            Comment


                            • #15
                              I am not sure about cornmeal, but I am able to tolerate it. I love it and make corn bread muffins, or bread with it. IT is amazing stuff!! great even for breakfast.
                              I also eat lots of pitas or flatbreads (there is no yeast in them to activate yeast infections). they are a tasty alternative.
                              If you are really craving bread, go into the frozen section of your grocery store and you can find homemade organic bread there with no preservatives in it. It is about 4 dollars a loaf, but this can last you a week if it is just you eating it.
                              Also if you have a breadmaker, this is a wonderful way to get homemade bread into your diet.

                              An idea for a great lunch or breakfast, I have an omelette, I mix two eggs, brocolli, caulliflower, mushrooms, shredded carrots, chopped zuchinni (green and yellow), and add cottage cheese to make it creamy and good. THEN I put this in my pita (LOTS on my plate as there is more leftover) and I eat this. IT IS AMAZING and FILLING!!

                              I also eat as my own treat homemade almond cookies. THEY are made from scratch, no butter, no added crappy ingredients,
                              JUST GOOD OLD rolled oats, almond butter, carob chips, egg, bake and eat! sooooo good!! HIGH IN PROTIEN, and low in bad fats. FILLING!!

                              I also love to place in the oven with sea salt, BUTTERNUT squast, SWEAT POTATO, ACORN SQAUSH, on 400 degrees for 40 minutes, and they come out like french fries....crispy and soooo good!!

                              ENJOY!
                              Last edited by bluetou; 11-13-2008, 09:42 AM.

                              Comment

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