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  • Newly diagnosed and overwhelmed!

    Hi!

    I am 29 years old and think I have had IC for 5-7 years. Only diagnosed two days ago.

    I am somewhat overwhelmed. I now think that my medical conditions could fill a book! LOL...(kind of) Does anyone else have PCOS as well as IC? I am also pre-diabetic with high cholesterol...One of my concerns other than when my pain will settle down is what I am going to eat?

    If anyone has some recipes that will work will these restrictions don't hesitate to share!

    Thanks

    PS-This is a wonderful site
    Dx's:
    IC -February 2007
    PCOS - August 2005
    Asthma and Allergies - 2003
    Depression - 1997
    Scoliosis/Sciatica/arthritis - 1997
    Hip Replacement -2001
    Possible IBS -2006

    Current IC meds:
    Elmiron, 100mg 3x's a day

    Other Meds:
    Metformin 850 mg/2x a day
    Singulair 10 mg/1x a day
    Albuterol and Advair
    Femara (infertility)

  • #2
    http://www.ic-network.com/images/spiritaward.jpg

    A Spirit Award goes to Tracey for an outstanding post on diet. Thank you, Tracey, for being here for all of us.

    ICNDonna


    Hey there LKL - glad you found us and welcome to the gang! Have you checked out the Patient Handbook??? Here's a link to it: (there's also one at the top of the page )
    http://www.ic-network.com/handbook/

    Here's a link to the IC Diet foods list as well:

    http://www.ic-network.com/handbook/diet.html

    I printed it and carried it everywhere with me, lol. I also used it to modify recipes that maybe weren't so friendly, basically for ingredient swapping etc. There's also a bunch of recipes here on the site as well, that can be super helpful.

    Here's some ideas of mine, that worked well for and my bladder - hopefully it will give you a jumping off point, and just remember if there's something your bladder can't tolerate, don't use it. It's just what ideas worked well for me personally, and go by your own tastes etc too. I hope this helps a bit! (If you aren't sure on an item, check the Diet list, I tried to indicate with an "M" if something was on the "May Be Ok" list, like black pepper, onions etc.)

    IC Food Ideas
    (M) = May be ok, if you can tolerate them

    Cooking Methods – pan frying in butter or olive oil or veg oil, grilling on an indoor grill pan, grilling on an outdoor grill.

    Frying vehicles – butter, vegetable oil, olive oil

    Seasonings: salt, pepper (M), herbs – fresh or dried such as thyme, dill, oregano, sage, marjoram, basil, mint, chives; olive oil (regular and flavored like with garlic or herbs – not spicy!), lemon zest, lime zest, orange zest – just the zests, not the juice! preservative-free garlic powder (if you can do garlic).

    Pasta, noodles, rice: Great staples to have around. Very versatile. I have many kinds of rice around, arborio, brown rice, basmati, brown basmati, plain white. I also have a huge supply of noodles and pasta. And when I would cook them for one thing, I also made sure to cook quite a bit extra for it to be morphed in to another meal sometime during the week…really helpful when you aren’t feeling all the great. Lots of times I would combine with the veggies I cooked in the garlic etc and dressed with olive oil, was pretty tasty! Lots of Fettuccine Alfredo made at home too, lol. Hubby loves that also. For extras, I sometimes added some cooked chicken or shrimp to it and some veggies -- or sometimes just veggies! Yummy! I love my pasta, that's for sure - so I tried to get as creative as I could!

    Vegetables (fresh/frozen): broccoli, cauliflower, carrots, peas, potatoes, sweet potatoes, asparagus (M), onions (M), corn

    Fresh and frozen veggies: The frozen more than the fresh, since it was winter, lol But, broccoli, cauliflower, green beans, corn (M), peas, carrots - were my favorites. I would sometimes cook them as directed with amt of water called for (mostly with the broccoli and cauliflower) and add chopped fresh garlic and salt to the cooking water. Then I would drain it, toss it back in the pan and heat it slightly with some olive oil and herb of choice or just toss with butter, tossing the veggies to coat. My hubby loved them that way! I would make myself glazed carrots from the frozen ones, cook them a bit, then add brown sugar and butter to taste, to get the glaze the way I wanted. You can add any of the other veg and make a medley. Can be tossed with pasta of choice for a great veg/pasta toss - season with extra olive oil and herbs to flavor the pasta. I have also made a large batch of veg medley to have with my chicken breast, steak, or burger patty and then the next night toss it with pasta for a new meal. Many vegetables are great roasted in the oven. Toss them with olive oil, garlic and/or herbs of choice. Roasted carrots are great with dill, roasted asparagus is great tossed with just salt, pepper (if it’s ok for you) and olive oil, roasted cauliflower or broccoli, Brussels sprouts, corn on the cob, use your imagination or your favorite veg.

    Sub for tomato: Home-roasted Red Peppers. Just thrown in the broiler, roasted til skins are blackened. Put in a bowl and cover with plastic wrap, let sit 15-20 minutes. The skin will "steam" itself off, and make it really easy to peel. I always had them around. Sometimes would store in olive oil, salt and some fresh chopped garlic. Can use anyway you like. I pureed sometimes in a blender with seasonings to use as a "red sauce" for my homemade pizzas! Yummy!

    Potatoes & Sweet Potatoes: Any potatoes really. Regular, the small new red potatoes, yukon gold, etc. I made lots of microwave baked potatoes, just skipped sour cream til I tested it out. My hubby's favorite way for the new potatoes (I like the really small ones) is to halve them and set aside. I melt some butter in a big bowl along with some chopped garlic (if you are ok with it) to taste and salt to taste, cook it for about 45seconds to a minute. Then I toss in the potatoes and cook as my microwave directions indicate. Or, I cube them up, toss with olive oil and salt (pepper if you can tolerate it) and additive-free garlic powder (I get mine from Trader Joes) and even some herbs (dill &/or thyme are especially good) then bake in about a 400-425 degree oven til roasted tender and browned, yummy! I also treat my Sweet potatoes the same way -- cubed and roasted, sometimes with some brown sugar sprinkled on if I want different. Also yummy when and cut and made into oven fries.

    Potatoes/Sweet Potatoes II –baked for either (for the white – salt and pepper & butter, unless you can do sour cream; and butter and brown sugar is yummy on the sweet. I have even used pureed cottage cheese in place of sour cream.


    Meats – chicken breasts, steaks, preservative-free pork (need to be careful with pork) burger, and plain ground pork from the butcher’s counter at the grocery store. Either grilled or fried. I love my cast iron grill pan, better than the outdoor grill! Meats seasoned with herbs. Sage and thyme are a great combo on a chicken breast pan fried in a little bit of butter.(great with mashed potatoes and homemade gravy – either with home made stock or IC friendly broths/stocks and homemade bread stuffing, again prepped with ingredients that are friendly to you and IC safe broths)

    I also prep my meats when I get them home from the store – every chicken breast gets cleaned and trimmed and individually wrapped and frozen. As do steaks. I will also patty up burger and individually wrap them and freeze as well. It makes dinner time much simpler during the week. No matter what the family is having (many times I have cooked two meals, one for me and one for them so they can still eat what they like) I have an individual chicken breast or steak or burger patty I can take out, defrost and cook easily for me.

    A great and friendly pork sausage (make sure you know it’s fresh and does not have any unfriendly additives – I eventually found out I was ok with any pork, but in the beginning, I stayed on the safe side) is one made from fresh ground pork, some real maple syrup, fennel, salt and pepper. Pattied up and pan fried.

    Many times if I am making spaghetti for the rest of the family, I will heat up some olive oil in a small fry pan, toss in some minced fresh garlic along with some (fresh or dried) basil and toss my pasta with that. Homemade Fettuccine Alfredo made with Kraft Grated Parmesan Cheese (in the green can) is also very friendly – and easy to make too, just not low-cal!!

    If we were having burritos – there were two batches made, one for me and one for the rest of the family. I would season my meat with lots of oregano (I mean lots  ), onion (I am ok with onion, but some are not, so be careful if you aren’t sure!!) and fresh minced garlic. Then I would wrap my own with an IC friendly tortilla, place it/them in a smaller baking pan separate from the rest and cover them (smother really) with shredded Monterey Jack cheese. Sometimes I would mix my meat mixture with fat-free refried beans (safe ones) and then fill and roll my tortilla.

    Lots of breakfast foods – for breakfast, lunch or dinner. French toast is easy and quick and friendly with pure maple syrup. Eggs and toast, another great alternative as is a “breakfast burrito” - scrambled eggs with shredded Monterey Jack cheese melted in with chives (or herb of choice) and rolled in a tortilla. Homemade pancakes (until I discovered I was ok with Bisquick). Eggs scrambled with feta cheese and herb of choice is yummy too. Friendly bagels and cream cheese (brick form, not tub) are a great lunch/breakfast option with some canned pears on the side. Plain oatmeal (not the packet kind, but the round container rolled oats or quick cooking rolled oats) with brown sugar or maple syrup on top. (cinnamon if you can handle it)

    Snacks – mozzarella string cheese, cottage cheese, Lay’s plain potato chips, Breyer’s (or any other all natural ice cream) French Vanilla (or other flavors with friendly ingredients like caramel) Kraft caramels, bagels and cream cheese, canned or fresh pears, homemade treats with all safe ingredients like sugar cookies etc.

    Lunches: Breakfast foods (see above), bagels with cream cheese (brick not tub), grilled cheese sandwiches made with processed American cheese, dinner leftovers.

    Tips/tricks: Out to dinner I would order my salad dressing on the side (ranch seemed the safest) and just dip the tine of my fork into it then stab my lettuce. Gave me flavor with minimal risk to my bladder, also took Prelief as insurance.

    I have come to love my Pizza with my sauce on the side or none at all. I order it with just cheese, green pepper and onions (or veg of your choice that you are ok with). I do all right with black olives, as I think most do. And if I get my sauce on the side, I just dip my slice into it for a little flavor and again, minimal risk – plus my Prelief as insurance.

    Breads: I have no problem with breads, only I tried to choose ones with the least preservatives etc. I still have to watch out for soy flour too. I love Lender's plain bagels, eat them often for lunch with cream cheese and a sprinkle of garlic powder and dill sometimes!

    Dairy: I have no problem with milk (but some do), vanilla ice-cream (favorite is Breyer's French Vanilla -- no preservatives etc), cottage cheese, cream cheese, mozzarella and onterey Jack (that's on the maybe list, I believe, but I have been fine with it from the get-go), feta cheese & ricotta. I made/make my own dip and salad dressing with cottage cheese, any herbs I am in the mood for (usually salt, fresh garlic and dill) and a little milk. I blend it all in the blender to the consistency I want. My hubby loves this better than store-bought!) I also have no problem with American processed cheese singles, Velveeta etc. So grilled cheeses were a mainstay!

    Beverages: Lots of water, lol. And some herb teas, look for decaf and watch out for rose hips. My faves are blueberry, peppermint and rooibos (Celestial Seasonings call it "Madagascar Red"). Most of my teas I get are by Celestial Seasonings, as it's readily available to me in my grocery store here in the boondocks, lol. I now have been able to do Kool-Aid, that's one of those test-it-out kinds of things, see if it bothers you personally.
    Last edited by ICNDonna; 03-17-2007, 04:41 AM.
    Hugs,
    Tracey
    How do you eat an elephant? One bite at a time...

    Harry arrived 2/23/09!



    *IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    IC Diet Cheat Sheet:
    http://www.ic-network.com/diet/2009icdietlist.pdf



    Dx's:
    IC dx'd Nov 2004
    Lymphocytic Colitis dx'd July 2005
    Possible IBS
    Current IC Meds
    Vistaril 25mg in the evening
    Previous IC Meds taken:
    Cystoprotek - 2 caps 2x's a day
    Elmiron, 100mg 3x's a day
    Ditropan, 5 mg 3x's a day
    Others:
    Wellbutrin 150mg 2x's a day for Anxiety/IBS
    Pepcid 40mg a day for GERD
    Zytrec for Nasal Allergies
    Align Probiotic daily for IBS

    Comment


    • #3
      Originally posted by LKL View Post
      Hi!

      I am 29 years old and think I have had IC for 5-7 years. Only diagnosed two days ago.

      I am somewhat overwhelmed. I now think that my medical conditions could fill a book! LOL...(kind of) Does anyone else have PCOS as well as IC? I am also pre-diabetic with high cholesterol...One of my concerns other than when my pain will settle down is what I am going to eat?

      If anyone has some recipes that will work will these restrictions don't hesitate to share!

      Thanks

      PS-This is a wonderful site

      I am in the same boat whith you except the diabities thank god. I am very confused and overwhelmed as well. just hold on and keep being surprised like me.

      Comment


      • #4
        Hi,

        I was diagnoised with PCOS when I was 17. Was on aldactone, and BC pills to control hormones up until Dec/06. My glucose fasting test was .1 away from being impaired so for now Im ok with that. I stopped talking the pills in hopes that my urinary and vaginal problems would go away. Didnt help.

        I havnt been "officialy" diagnoised with IC by a Urologist. But I have been "officially" dignoised with a Vulvodynia on Jan17/07 my symptoms started Mid Sept/06. I am awaiting a cystoscopy for an IC dx.

        I had an appt. with my Gyno a few days ago, and she tells me that most urologist dont like to deal with IC patients and prefer to stick with the typical Uro surgeries that they like to do. She says there really is no point to do the cysto as all my symptoms point to IC, and I have vulvodynia which are often seen together. She then writes me a prescription for Elmiron. Havnt taken it as Ive read some of the side effects are nasty.

        Also Im so confused as I waited months to see a Uro. Had a failed Cysto/with local. Uro said my muscles were contracting and he could insert the scope. My Gyno said this is typically for people who have vulvodynia as our pelvic muscles tend to spasam.

        I have an appt in April to have a cysto under general and now I dont even know if I should go. I mean I have read that it can be painful afterwards

        Sorry to go on...but I am also beyond overwhelmed. Like it wasnt bad enought I have PCOS now I have 2 other conditions which are hard to treat sucessfully.

        Tina

        Comment


        • #5
          Hugs
          Ronda

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


          Link to Patient Handbook:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



          ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Comment


          • #6


            Traceann did a great job with the diet stuff... so I'll just say that we're glad to have you here. It's a great place to ask questions and get support.
            ****
            Jen

            *Diagnosed with severe IC in 2004
            *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
            *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
            *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

            **I am not a medical authority nor do I offer definitive medical advice. 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.

            Comment


            • #7
              I don't have anything to add, but did want to say

              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


              • #8
                to the boards. You will find a wealth of info within these pages..

                Great Job Tracey on the diet.
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  Hi Trace Im new to this site and found your info very helpfull. thank you for taking the time ,I will print this and will carry with me. Loren
                  :Loren

                  Current Meds
                  Elmiron 300mg tid
                  Elavil 25mg at hs
                  Atarax 50mg bid
                  Tramacet as needed
                  Vitamin D 2000 iu bid
                  Gabapentin 300mg tid
                  Uracyst instillatons one a month

                  Comment


                  • #10
                    Oh I totally agree!!!! :woohoo: :woohoo: :woohoo: This was beyond helpful to me! It gave me hope that I could still eat and not be terrified of food! Thank you so much Trace. You deserve it 200%!!!

                    *big duh for me*
                    Last edited by Moonheart; 03-17-2007, 11:49 AM. Reason: edited to add, I put this in the wrong post! I was posting in the award thread I thought! ;)
                    http://www.TheCraftyEwe.etsy.com

                    Comment


                    • #11
                      Thank you all!

                      I really appreciate all of the information and support!
                      Dx's:
                      IC -February 2007
                      PCOS - August 2005
                      Asthma and Allergies - 2003
                      Depression - 1997
                      Scoliosis/Sciatica/arthritis - 1997
                      Hip Replacement -2001
                      Possible IBS -2006

                      Current IC meds:
                      Elmiron, 100mg 3x's a day

                      Other Meds:
                      Metformin 850 mg/2x a day
                      Singulair 10 mg/1x a day
                      Albuterol and Advair
                      Femara (infertility)

                      Comment


                      • #12
                        No Luck!

                        I am having absolutly no luck with the whole diet thing. I am 20 years old (21 in Sept...and not even looking forward to it!!) and when my fiance and i are out late i tend to fall asleep. It sucks so bad. I hate it! Im never full! I need help!!!!


                        Last edited by Danielle22; 08-02-2009, 01:29 PM.
                        .Danielle.

                        Comment


                        • #13
                          Hang in there Danielle

                          You are really young still--and so facing this is hard. It takes time to cope with things. Whenever there is something new and difficult--for me anyway I almsot go through stages that one would go through with grief. I get mad and super mad and angry. Then I sort of realize okay I have to just deal with this--it's not going to go away (even if I wish it too). So finally I face it and find ways to cope with the situation. It takes time. Just like you can't hurry the grieving process. In time you will find ways to cope. Try to find things on the diet that you like and spoil yourself a bit with those things. It is a big thing to cope with at your age--so it's okay to struggle. It will get better in time. Maybe sometimes we think should just be able to handle things--but everyone is different. Some of us are more emotional. I'm sure your fiancee is a big support to you. Hang in there.

                          Comment


                          • #14
                            Hello, LKL!

                            I recommend VEGGIES, VEGGIES, and more veggies.

                            Breakfast for me is a broccoli and egg omelet.

                            Lunch is grilled chicken and iron-skillet-fried zuccini squash.

                            Dinner is steamed veggies and usually a meat.

                            I drink teecchino all day.

                            I recommend you read the book, EAT TO LIVE by Joel Fuhrman MD. It's absolutely wonderful. It explains the effect different diets have on the body in language anyone can understand, and makes a strong case for a largely vegetable based diet.

                            Good luck to you!
                            -Laura
                            • 61 yrs old
                            • Diagnosed Feb 2009, but had IC for years before that;
                            • Also horribly progressive, debilitatingly painful, severe vascular rosacea and erythromelalgia.

                            • Stuff that helps me--
                            - the IC diet
                            - CystoProtek (wonderful stuff, highly recommended)
                            - Vagifem (vaginal estrogen)
                            - Remeron (Mirtazapine)- 30 mg nightly for depression and IC nerve pain
                            - Hydroxyzine- antihistamine for IC

                            Comment


                            • #15
                              Danielle

                              Hey, I am 19 (will be 20 in September, too!). I was just married in June, so I can understand what you are going through.

                              Eventually, with the help of diet and medications, your symptoms will become under control and you can start to feel better.

                              If you ever need to talk, just PM me!
                              -Cassie

                              21 year old female. Diagnosed as of November 2008 with onset of symptoms.

                              I am currently diagnosed with IC, PFD, endometriosis, asthma, and vulvodynia/contact dermititis, IBS, and fibromyalgia.

                              Medications:

                              IC:
                              -Amitryptyline 10 mg

                              Fibromyalgia:
                              -Neurontin (in place of lyrica because I can't afford it- lol) 300 mg x3 a day
                              Flexeril. 10 mg. As needed.
                              -
                              Endometriosis:
                              -Microgestrin.
                              First laparoscopy showed moderate to severe endo

                              Comment

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