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What do we need to avoid?

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  • What do we need to avoid?

    I know that added things (flavorings, fillers, etc) can affect IC. What sort of things upset IC? Is "natural orange flavor" bad...

    I appreciate any guidance because I'm really tring to figure this all out and reduce my symptoms (or hopefully someday soon go into remission). The PA said that my symptoms (frequency/urgency) is one of the most extreme she is dealing with right now. I asked about alternative things and she said proceed with things (like aloe) and stick with those for a month, but be warned they may actually bother my IC. Ug...

    [SIZE="1"][B]Be well, Alyssa :hi:[/B]


  • #2
    HI! Sounds like you're having a rough time right now.....sorry to hear that. IC can make your life SO miserable sometimes!
    I avoid caffeine, chocolate, teas, coffees, carbonation, night shade veggies (tomato's, peppers, potatos, eggplant, etc), citric acid, citrus fruits, anything spicy, calcuim tablets......some vitamins......the list seems to go on and on...sad to say.
    I've taken freeze dried aloeVera for over 2 yrs now and it works well for me.
    Hope you get your IC under control......good luck! Roxie

    Double Spinal Cord Stimulator surgery 8/09
    Unsuccessful MiniArc sling surgery 12/07
    Dx'd Hypothyroid
    Dx'd Chronic Axonal Neuropathy & Myopathy
    June 2007
    Dx'd IC May 2006 (after suffering for 25+ yrs!)
    First Cysto 1979
    First Hydro 1981 (Many treatments since then!)
    Collagin"Durasphere" injections for urethra
    Gall bladder surgery Aug. 2004
    Gastric Bypass Dec. 2004
    Dx'd: Barrett's Esphogus July 2004
    Dx'd: Vaginal Atrophy 2005
    Bladder surgery 2000
    Dx'd: IBS 2000
    Hysterectomy (fibroids) 1999
    Laminectomy 1989
    Dx'd: Degerative Disk Disorder 1989

    For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
    I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra's amazing stuff!!:woohoo:


    • #3
      Are you drinking a low acid water such as Evian or Arrowhead? Check the acid level by using test strips. Also, when your bladder spasms try putting a moist heating pad like "Heat Buddy" or taking a bath as hot as you can step into with burning yourself. That really helps me. I also take 2 Prelief tabs (can purchase at Walgreens or this website) before each meal. My sympotms of urgency/frequency have siginificantly improved since.
      I take Elavil 10mg, Adarax 25mg. both at night as well. Everyday, I stretch my lower back to take the pressure off the pelvic nerves that stem from the spine. With all these steps taken, I have improved from quite debilitating symptoms to now that is quite free of symptoms.
      Wishing you well.

      Stopped taking Elmiron for the time being-- could not tolerate side effects

      ADARAX 25mg at night and at times morning
      Calcium mag citrate w/ vit.D
      Prelief 8 to 10 a day
      Cystoprotek 4 a day

      ~God's mercy and grace are infinite~


      • #4
        Hey Roxie2007!

        I am having a pretty rough time, but it wasn't quite as bad as January/February was. I have been miserible for the last 6 months

        It seems like you have to avoid a lot of things
        I haven't had caffeine in years (gives me breathing trouble), but I hate avoiding chocolate, coffee and tea! I don't do carbonation either. I noticed you had RNY. I had a lap-band 2 years ago (doing great). All my problems came up after I lost 145 pounds (still have 50-60 left). Anyways, I wondered if that weight loss upset my system somehow (I lost all 145 in the first 11 months). Anyways... I'm surprised you can't do potatoes either. All kinds give you trouble or is it just a few kinds (like red skin)?

        I ordered some aloe vera from desert source or whatever that product is here and if that works, I'll keep up with that! I'll try anything to improve my symptoms. How does MSM work for you? Do you just use it on the opening of the urethra? I saw aloe gel on that desert source website that claims to make the groin calm down (especially with intercourse). How does oral MSM differ (treatment/symptom) wise from the gel?

        Thanks for the info!

        [SIZE="1"][B]Be well, Alyssa :hi:[/B]



        • #5
          I thought about testing my water, but where do you get test strips? I was thinking maybe a fish store/pet store? I have been using Zephyrhills for a few years, but switched to using tap with my Brita filter. I was feeling ok, then the filter broke and I went to back to the bottles. I've been worse since. But I also had some "avoid foods" and so I'm trying to find the cause/effect relationship. I wanted to check tap vs Brita filtered tap vs Zephyrhills vs Evian. I know Evian didn't make me worse (I tried it for a couple of days). Does that sound like a good plan? I'm just trying to find what works!

          I have been taking baths but the Elmiron gives me hot flashes, so I can't tolerate a really hot bath (I got really overheated the other night). I think I'll give it another shot tonight.

          I have not tried the prelief tabs, so I'll have to give that a shot. I'd hate to take that before every meal, but I'll do what is necessary!

          I am on Atarax morning, noon, night and Elmiron morning, noon, night. I also take Ultram here and there (I was doing it morning and night, but constipation started to set in so I cut back to just night). I can't take Elavil (gave me gastroparesis and I couldn't swallow until it started to fade from my system). Oh well. I am also going to try aloe vera and get a multi-mineral because I think my Centrum gives me trouble (did last night I'm pretty sure).

          I should stretch. I hear it helps, but I would much rather go running! I can't do that until I get my bladder under control

          Thank you so much for your advice!
          [SIZE="1"][B]Be well, Alyssa :hi:[/B]



          • #6
            Oh, it can be a long road, Born2Swim, to finding all your trigger foods. Some people seem to have a lot, and others, not as many. It's important to find the foods that irritate you and avoid them, but it's also important to find foods and drinks that you can have, that you like -- otherwise you'll go crazy.

            I think I'm kind of medium-sensitive to diet. I don't usually have problems with preservatives, for example, and I can eat small amounts of chocolate with prelief. Taking the prelief is no big deal; it's actually good for you, because it's a very digestible form of calcium. I carry some with me in a pill container that hooks onto my keychain (got the pill container in Walgreens).

            Some people have problems with potatos because they are high in potassium. Me, I can eat potatos but not bananas. I wonder if the difference is in the preparation; maybe because potatos are cooked, they don't irritate, but a plain banana will have me doubled over in pain.

            But I am discovering just how many varieties of pears there are in the world. And I've grown very fond of vanilla milkshakes -- we try to get light ice cream when we can.

            It's a very individual thing. We all know how hard it is, and you are welcome to complain about it anytime! As long as you try your best to do it.

            BTW, silly question, but is your username Born2Swim bc. you were or are a swimmer?
            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
            Wishing you happiness and good health, and all the best out of life.

            Peace, Carolyn

            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

            On the Beach with IC


            • #7
              Downloadable IC Food List

              Hi there,

              Folks are right, it can take a little while to determine your own trigger foods. Also, your trigger foods can change over time meaning some foods may bother you now but not later (fun right?? )

              I have a downloadable version of the ICN diet on my website:

              That may help you get started!

              Gentle Hugs,

              Julie B
              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!*


              • #8
                Evian water has the PH listed on the 1 liter bottle, i believe it is 7.5.

                That and Fiji are the only waters i drink

                Lyme disease diagnosed 11/05
                vulvar vestibulitis diagnosed 2/06 -worst case she has ever seen..very bad.
                IC diagnosed with hydro/cysto- may 17, 2006

                Over growth of lactobicilli found 8/07 treating with doxy.

                Was able to get my first internal exam evaluation for PFD....wohoo 1/18/07:woohoo:

                8/22/07- was able to get my first speculum exam, with pap

                Strep D found in bladder with United medical labs May 2006
                2 strains of strep in stool culture 9/06
                high Strep ASO titre found 10/06

                NEW MED

                Capsasin cream-once a day for 20min,
                BUt wont lie it does burn

                About to start valium supositories for PFD

                Trigger point injections- oct 07

                Current meds:
                Neurontin- 100mg at night supposed to work up to 300mg if i can tolerate it
                Zanaflex 2mg
                IC and low oxalate diet, no sugar diet
                Xanax for appointments to help relax me since they cause so much pain

                Started PT 3/07, PT has really helped me in ways I never knew that it would

                Meds ive tried
                Soma- can barely tolerate half a pill
                Atropine cream- didnt seem to work, although i found out I was applying the creams wrong
                Estradiol cream
                Urelle- caused worse bladder spasm and retention

                Various antibiotics for lyme which caused yeast and made the IC and VV worse

                waiting for the next chronic illness to pop up

                "Did you know?
                Every 15 seconds,
                a person is
                diagnosed with
                interstitial cystitis."
                Source: J. Dimitrakov, MD


                • #9
                  Evian and Figi have the highest ph of all the waters. Brita water (and my tap water in Orange County CA) is definitely acidic atleast when I tested mine in December. Try the Evian, and Preliefs, especially before any coffee and tea. Low impact is the way to go. I used to be a long distance runner and now since IC I have switched to eliptical or treadclimber machines in the gym. Really do try the Evian, Preliefs, and a Heat Buddy right along the pubic and pelvic area along your bladder (since baths are not easy for you right now). I think if I had to pick three things that have truly given my relief (aside the Adarax and Elavil) they are Prelief tabs with every meal and coffee drink, Heat Buddy, and lots of Evian water. Well Wishes to all...

                  Stopped taking Elmiron for the time being-- could not tolerate side effects

                  ADARAX 25mg at night and at times morning
                  Calcium mag citrate w/ vit.D
                  Prelief 8 to 10 a day
                  Cystoprotek 4 a day

                  ~God's mercy and grace are infinite~


                  • #10
                    Everybody is different with diet. The list can only be a "guide" its not bible. I followed the guide to a T only to find out I CAN eat practically anything I want.

                    I don't drink any other beverage other than water and blueberry or peppermint tea since my diagnosis. I tried crystal light and Propel last week but it did send me into a 2 day flare. Too much citric acid and chemicals I guess.

                    My diet sensitivies are Kellogg's All Bran Bars, Green's Energy Bars (OMG send me SCREAMING like I'm having a baby for some reason!!!) and pizza. Tomato sauce is completely off limits for me, BUT I can eat tomatoes raw!!! That is all I have found so far that I'm sensitive too. If you had asked me in March, I would have told you I couldn't eat anything.

                    I believe the meds have to kick in first to calm your bladder down before you can figure out what your diet sensitivities REALLY are. Its impossible to sort out when you are always in a flare. I think you should stick to a bland diet right now until you start feeling better. Then, start adding things back to see what you can tolerate. You will probably be pleasantly surprised!!

                    Definitely quit the Centrum right now. That could be a huge culprit right there.


                    • #11
                      I'll answer your silly question! I was born to swim (as the name indicates!) . I was swimming before I could walk! I swam all through elementary school/middle school, but not competative. I could swim every day and going to water parks is so much fun! I started running about 2 years ago and I have been doing that a lot! I was getting ready for my first half-marathon, but then IC came up and I've been sedentary for the last 6 months.

                      I am really struggling with the diet, as I have indicated in other posts. About 80% of my favorite foods are on the avoid list. I'm trying to find substitutes and relish in the other favorite foods, but I'm tired of oatmeal...

                      I have been taking Prelief before every meal, but it didn't help me eat chocolate! I wanted it to help my chocolate craving! I'll try white chocolate like Donna suggested to me and see if that will be enough of a substitute (that I can tolerate).

                      That's weird that you can do potatoes and not bananas. I can't eat bananas for other reasons, but if I can't do potatoes either, I'd be devestated! How can a part-Irish woman NOT eat potatoes! Maybe different kinds of potatoes react differently...?

                      I hear ya about the various types of pears out there! I love Bartlett pears, but I have a feeling I will try others as well. I am hoping melon is ok. I can't really see a worsening after watermelon (with cottage cheese and cool whip).

                      I am going to make up a grocery list and choose only friendly things and toss all non-friendly things (or at least put my chocolate protein shake in the back corner of my pantry! )

                      Thank you!
                      [SIZE="1"][B]Be well, Alyssa :hi:[/B]



                      • #12

                        Thank you so much for the link and information (in your signature)! I would really be thrown for a loop if I figure out my triggers to only have them change in time. At least I know it could happen though.

                        Thank you again!
                        [SIZE="1"][B]Be well, Alyssa :hi:[/B]



                        • #13
                          If those are the only waters you drink, how do you eat out? go on vacation? etc?

                          I got a pH indicator and my tap water and Brita water has a pH of 7.6... so I'm not sure if my water is a bad thing...

                          This is so hard to figure out!

                          Originally posted by mich2604
                          Evian water has the PH listed on the 1 liter bottle, i believe it is 7.5.

                          That and Fiji are the only waters i drink
                          [SIZE="1"][B]Be well, Alyssa :hi:[/B]



                          • #14
                            You can take more prelief than the dosage indicated on the bottle. There's no real maximum amount, because it's only a calcium compound. So if two pills doesn't help you, try a few more before you give up on it altogether.

                            I was born to swim too. I love waterparks more than anything in the world, practically, and like you, I've always loved to swim but not competitively. My husband is the same way. But we somehow produced a daughter who demanded to join the swim team in kindergarten, and has been competing ever since. Go figure. That's her diving in the picture below, but diving is only a summertime hobby for her. She has swimming for 2 hours a day, 5 days a week, so she can't really do any other sports while school is in session, LOL.

                            It gets easier. Really, it does.
                            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                            Wishing you happiness and good health, and all the best out of life.

                            Peace, Carolyn

                            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

                            On the Beach with IC


                            • #15
                              I have heard Evian and Fiji are the ones to go for, but what do you do when you go out, go on vacation, etc? I did get a pH indicator and my tap water and Brita water read 7.6. I'm thinking I should get a more accurate indicator. What do you use? Where can I get one? I got mine from the pet store, but it had a narrow range 6.4-7.6.

                              I have been using Prelief before every meal and I didn't get any help when I had chocolate yesterday! I will still have it with every meal, but I don't plan to have tea or coffee for a while... at least until my bladder calms down some with meds/instils.

                              Exercise... boy I wish I could find something I can tolerate right now. I tend to get bored when I don't do my long runs. The ellipse machine is boring to me but I should give it another try I guess. My hot flashes have improved (maybe getting used to the Elmiron) and so I did have a few baths this past week. That always helps, even a small amount. I will take another one tonight.

                              Do you know where I an get a Heat Buddy locally or is it an online thing?

                              Also, do you know where I can get Evian or Fiji cheaper (I'm a poor college student! )?

                              Thank you so much for your help! I hope to return to the pool someday soon. Maybe that will be a step back into exercise, a low impact one.

                              Thank you!!!
                              [SIZE="1"][B]Be well, Alyssa :hi:[/B]