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  • #61
    worst triggers

    My worst triggers are coffee, tea, pineapple, canteloupe, peaches--and probably grapefruit--but I'm so addicted to grapefruit that I can't face up to the fact that I'm probably allergic to it.

    Also--there have been times in my life where I have been able to drink coffee. But then I'm in hell all over again.

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    • #62
      I don't know about Puroroast. When I was really bad I couldn't drink anything that was bad for the bladder including the coffee substitutes. I found out I could tolerate Kerns brand Horchata and that was a relief because I was so sick of milk and water. The Horchata is rice milk flavored with cinnamon so it was a nice change. You can buy Pyridium over-the-counter. It's sold as Uristat but you are not supposed to use too much of it.
      The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
      First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
      Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
      Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
      Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
      BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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      • #63
        Oh I meant to say that I've been okay with chocolate and tomatoes and ketchup the whole time. Chocolate milk was a no-no but regular candy chocolate is fine. It is weird. I keep thinking this has to be some kind of kidney problem because liquids have always bothered me more than foods.
        The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
        First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
        Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
        Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
        Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
        BABY GIRL 10/28/08 *** BABY BOY 7/8/11

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        • #64
          Great Thread!

          For me the absolute worst is citric acid and it is in everything!!

          I didn't read every post but does anyone else have issues with it?
          BBB - Diagnosed with Moderate/Severe IC (age 12), Severe PFD and V V (age 21), IBS (from birth) & Gastroparesis (age 42)

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          • #65
            Maxeeeene
            I drink a lot of chammomile tea. I like it plain, no sugar...and iced cuz it's hot most of the time where I live. Very easy on the bladder. Mint tea is ok for me, too.

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            • #66
              different triggers = different symptoms

              If I have chocolate I will end up with urinary symptoms. Painful and not able to let it go, but no more pain. For me that is my worst symptom. If I eat watermelon though I will end up curled up in a ball with crying for hours. It hits my with in 20 minutes. My Urologist said about 5% of ICrs react to watermelon. The other worst attack I ever had was from Curry Chicken. I made it from scratch. I had just been dx and did not believe that diet had any thing to do with it. I spent that hole night curled up in a ball, crying and praying. I started the diet the next day.
              with love, Katherine

              IC onset 31 dx 37, dx with TMJ at 14, dx with IBS and PFD at 43
              current meds;

              0.05mg Levothroid
              ton of vitamins. (Glucosamine Condr. NO MSN, Niacin, Turmeric Force, 2000 IU Vitamin D3, Calcium Citrate, Anti-Oxident, Vit B complex)
              IC Diet ~ very limited
              Hot tub

              *** was on 500 mg Morphine a day for 9 years***
              ***May 14th 2009= 2 year OFF morphine !!! ***
              *****THERE IS ALWAYS HOPE*****


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              • #67
                Maxeeeeeen you need a new doctor

                I take Pyridium Plus. I take three a day. There is a much weaker over the counter product called AZO standard. I also take Elmiron, Valium at night and first thing in the morning as a bladder muscle relaxant I take 50 mg Hydroxizine PM and 10 mg AM. I take Elival PM. For flares percocet works for me. Heating pad helps a lot. I use ones that stick to my underwear during the day and the plug in kind at night. I have a toilet seat that is called a toto washlet. It can spray warm water - very soothing. Bath tub helps. I'm not a coffee drinker. I'm sure that is tough. Some people can do peppermint herb tea but all I drink is Evian water. There are a lot of clueless doctors out there. Get a consultation at least with someone else. Check for support group in your area. Always pick up at least something useful from anyone I talk to with this awful disease.

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                • #68
                  I for one like reading different peoples experiences. It makes me feel less alone, more like others with this same rotten condition. It might make me less likely to try a food, spice or beverage that would cause a major flare. (particularly if its something that I'm not even that fond of of if I'm not even really hungry) Nutritional deficiences are possible with IC food restrictions, let alone social isolation. I know I am not the only one who occasionally eats the wrong thing.

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                  • #69
                    Ok... so what is this about? (BTW, I cut out the name of the poster that said this comment):

                    "I have two issues with most of the threads. People keep asking the same
                    questions without reading previous threads and they keep discovering
                    the same things over and over. This is a horrible illness. Why is it so
                    hard to read the relevant threads instead of making big mistakes for
                    months or years? THe only threads for such repetitions is the "newly
                    diagnosed" thread, where new patients come with no idea.

                    For example, blueberries are not on the "safe" list. They are on the
                    "maybe" list. If you just click on the food list, you'll know that.

                    Also, I know the diet sucks. Last night I was at a party and as usual,
                    there was nothing I could eat or drink. I hate it. But still it's
                    better to stop hurting your bladder than enjoying "bad" food. I think most
                    people who say they're not diet sensitive are not being very honest with
                    themselves. It took me 2 weeks on the radical diet before I could
                    figure that I was indeed diet sensitive . Before that, it seemed to be
                    random. I would eat something bad and not be affected and then eat
                    something safe and have flares. That's how it felt. Once I let my bladder rest
                    with only the safest foods and then started trying the bad foods, then
                    I realized, I was very diet sensitive and it was not random at all, but
                    when you don't let your bladder rest, it starts reacting to everything
                    indiscriminately. I just didn't know it. So before you say, you're not
                    diet sensitive, try the radical diet for a couple of weeks, let your
                    UT calm down and then try to eat chocolate or spices and see what
                    happens. With some foods, your bladded reacts immediately. With others, it
                    takes 3 days. So how do you know that when you're flaring, you're not
                    reacting to the chocolate you ate 3 days ago? You cannot know that unless
                    you test each food item -one at a time- for three days and add foods
                    slowly to your list. I think it's irresponsible to treat your bladder
                    carelessly and then complain about the pain, or say that you're not
                    sensitive to diet. I am not talking about those who have done what needs to
                    be done and know for sure that they're not sensitive to diet. I feel
                    really sorry for them because thanks to a strict diet i am practically
                    pain-free and I would hate to lose that. I ended up in the ER after eating
                    Gazpacho this summer, now I know why.

                    I think I respond badly to almost everything on the "usually bad" list
                    except some yoghurt and some types of aged cheeses. I'm fine with most
                    of the foods on the safe and maybe lists. I say I think because I
                    cannot even dare to eat some. Other than that, ginger gives me horrible
                    flares and I can drink some(so far I have not tried more than a half glass)
                    alcohol with Prelief without a problem. However, the longer I diet,
                    the better my bladder feels and I can eat small amount of bad foods
                    without getting a flare once in a while. There are days where it seems like
                    I can eat anything, but I don't. I still stay away from them, my IC is
                    mild and I want to arrest the development until a cure is found. If no
                    cure is found, arresting it is even more important. But I can feel
                    that my bladder is actually healing. The only good side effect is that I
                    keep losing weight because the food is blander than I'm used to, so I
                    eat less because I enjoy it less and I cannot eat most of my favorite
                    dishes, or I end up eating lettuce at any restaurant I go with my
                    firends, but health comes before anything else.

                    But if a diabetes patient ate candy bars, or a heart patient keeps
                    smoking and starts the day with bacon and eggs, I'd be mad at them. I feel
                    the same way about IC patients who keep eating food that will cause
                    flares, then are in pain and then argue that they're not sensitive to
                    food. We are human and we all eat bad things once in a while, but please
                    don't make a habbit out of it or defend it. What is your illness
                    progresses to the point it disables you? Isn't it wonderful that now we have
                    tools to manage our pain and slow down its progress? Because this is a
                    progressive disasease in most cases. You have to keep that in mind.

                    Sorry about my reaction, but if we don't act responsibly, we don't
                    deserve to complain.

                    And about Evian: please first check with your water company what the Ph
                    level of the tab water in your area is. Our water has a higher Ph
                    level than Evian consistently, so I don't waste my money on water, I filter
                    tab water for impurities. When I travel, I play it safe and buy Fiji
                    or Evian, but at home there is no need."


                    Now to respond...

                    I did the radical diet for 2 months. 2 MONTHS. I am not diet sensitive and I did the radical diet to prove it. I can't have pop, coffee, tea, and Orange juice. That's it. Everything else is fine. Yes, I am lucky.

                    You said, "but if we don't act responsibly, we don't deserve to complain". This is a support group. This disease is difficult to live with and came on suddenly for many people. If someone ate food that had a bad ingredient in it by mistake (or by trial and error to determine what foods are bad) and it caused a flare, they have the right to complain. IC sucks and they are not alone. People can relate to them (maybe you cannot), but show some sympathy for those that are struggling with their diagnosis.

                    When I say I did that radical diet for 2 months... I ate only the ok foods (and being vegetarian and do not cook, I was very limited). I started to add things back slowly, maybe one new thing every week. It has been over a year and I still have not tried many things. My bladder is still angry at me and just because your bladder improved quickly on the diet does not mean other bladders react the same way. Show some sympathy and intelligence for knowing that it happens and that this disease varies person-by-person.

                    I'm sorry that I am so angry in this post. I got this remark in my inbox tonight and was so furious that someone could be so inconsiderate and rude to other IC patients. I guess she didn't like that I started this poll, but apparently everyone else likes it so don't read "repeat posts" if you are so bitter about people having questions.

                    Sorry everyone else for me being negative here. I don't have tolerance for bitter people that take it out on others, especially when others are feeling sick.
                    [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                    [

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                    • #70
                      Alyssa maybe it was deleted to keep peace. Maybe it would be a good idea to talk with one of the moderators.

                      Sending hugs, Trishann

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                      • #71
                        everyone should be able to voice their opinions, but should do so gracefully. apparently mine reaction was deleted too. Isn't the first amendment freedom of speech?
                        Meds regimen: Elmiron 100mg Daily, Allegra 180mg Daily, Nuvaring, a probiotic

                        other medical issues- IC, IBS, Migraines, Eczema, Asthma, Allergies, Syncopal episodes (that they still don't know what causes them...) and extremely loose joints

                        Drink choices: water, and the occasional caffeine free pop

                        Comment


                        • #72
                          Well put Alyssa. I am not very diet sensitive either. There are some things thare are in instant flare but I am no where near as sensitive as most. I did the diet for several months and still felt tons of pain. I started adding thinks back in because I hadn't felt better on the diet and I didn't get better or worse by adding foods back in. I have read many people only have a couple of trigger foods and I have read many that have tons of trigger foods. Everybody is so different when it comes to IC.
                          Christine



                          I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
                          1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
                          2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
                          I have tried every oral medication as well as rescue instills and DMSO.

                          I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

                          Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
                          Also proud mom to the best Bullmastiff on earth, Claus

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                          • #73
                            I debated if I should quote that remark I got, but I was just so blown away by it and wanted to stand up for people that were being attacked. If a moderator reads this, feel free to delete it if that was cut for being rude.

                            Diet is a difficult thing for many of us to deal with and with extensive trial and error, some find diet important while others are not greatly affected by it. IC is so variable (I am one that thinks there are different causes for the bladder trouble), which is why treatment is so difficult for many of us.

                            Anyways, I was just so shocked tonight and I guess it got pulled before I responded, but I assume others read it and I couldnt' believe the attitude on that post.

                            We are on this forum to support each other!
                            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                            [

                            Comment


                            • #74
                              Tiffrn83. Jill is the manager of this site, this is her website. Donna I believe is the co-manager. Really this probably was deleted for some reason and need to ask Jill or Donna about it. If they say it is ok nothing is wrong with it, then everything will be fine.

                              This is a wonderful place to find help and it is a nice place to be able to come to.

                              Hugs, Trishann

                              Comment


                              • #75
                                Free Speech

                                The First Amendment only prohibits the restriction of freedom of speech by the U.S. government. The Fourteenth Amendment is interpreted as extending this prohibition to the State governments.

                                These constitutional provisions in no way restrict the actions of private individuals such as the owner and moderators of this site.
                                Last edited by Berkshire Road; 10-05-2007, 08:01 AM.
                                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

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