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  • #1

    What did i do wrong?

    I have been doing great for days.....Something has gone wrong PLEASE give me opinions on this:
    At 2pm Sunday today I started having terrible pain, i have followed the Ic diet
    What could it be
    Home made kettle Corn at 1pm Sunday. ( Popping corn, Vegi oil, sugar and salt)
    at 5 am Sunday morning I had Cheerios and milk
    or Good and plenty licore i had Saturday at 8pm

    i am scared to make the same mistake again any experience here would be so appreciated
    Anita
    Tags: None
    • #2
      I'm still new to the diet but I would say that it's not the kettle corn because there is nothing in that to irriate your bladder. I would guess either the cherrios or the candy. Cherrios has some preservatives in it I'm sure like just about all other non organic cererals out there. The candy could have done it w/ the artificial coloring or something else in the candy.
      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

        Comment

        • #3
          Cheerios have added vitamins & minerals & the preservative BHA or BHT. I can't eat them without a flareup. Instead I buy Oatios at the health food store, which do not have the preservatives or the added vitamins.

          You might look at the wrapper of the Good & Plenties - see if there are artificial colors or flavors or citric acid. Most candies have those, which can bother IC. If I want licorice, I usually get Panda brand black licorice.

          Hope you feel better soon!
          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

            • #4
              My guess is the candy, definately!
              *IC-- Summer 2004; PFD--October 2005
              *Fibro--Fall 2000; CFS-- Fall 2000
              *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

              Total Abdominal Hysterectomy--adenomyosis--9\08

              04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                Comment

                • #5
                  I just realized...

                  i also noticed i was drinking Dasani water all day ( has enhanced minerals) I got a huge one last night . i can't believe i have to worry about water too. well i will avoid Cherrios and good and plenty. thanks Everyone. I'll get the hang of it eventually. Less that 24hrs to my first appointment. i hope I don't have my hopes set to high. For the past 48 hours I am measuring my input and output. I have tests and ultrsounds.
                  Thanks my new friends
                  Anita

                    Comment

                    • #6
                      Candy and milk are very bad for me - so is sugar and salt. I would say what you ate it was daring as anything I would venture. Have you seen "List 1" in terms of diet "no no's". Feel better!!!
                      Oh - Fuji water is good for me.

                        Comment

                        • #7
                          Funny how we're all so different.
                          Dasani, Fiji & Evian waters flare me.
                          I'm ok with Aquafina, Crystal Geyser, Arrowhead.

                          Most IC patients are ok with Evian. And most IC patients are ok with milk.

                          Take a look at the IC diet in the Patient Handbook. I started out eating only out of the left hand "usually ok" column & eventually tested out the middle column foods one at a time after my bladder calmed down.

                          Become a label reader! It's astonishing the amount of acidic preservatives Americans put into their food. It really helped me to eliminate all foods with: citric, sorbic, malic, ascorbic acids, BHA & BHT, red dyes.

                          Hoping you feel better soon!
                          The hardest part is figuring out what works for you. Life gets a lot better after that.
                          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

                            • #8
                              but it said...

                              Licorice is in the yellow on th diet sheet , i thought it was ok.......Sugar is in the yellow. i guess maybe it was artificially flavored?

                                Comment

                                • #9
                                  Yes, but read the package label. Good & Plenty are artificially colored & I'd bet money it had citric acid in it as a preservative.

                                  If you like black licorice, Panda brand is a good one, no preservatives. Jill also has some "safer" candies for sale in the ICN shop.

                                  I'm sorry. I remember having those same frustrations. I remember seeing "tortillas" on the "usually ok" list, eating just one & being sick for 3 days. When I read the label, I saw that this innocent looking tortilla had citric, sorbic & malic acid in it. Mystery solved. Geez.

                                  One of the most important things you can do for your IC healing is become a label reader!
                                  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

                                    • #10
                                      i took everything said

                                      Thanks everyone I made a list of all the acids..ect that you all said. it is now on the fridge with all the other no no's.

                                        Comment

                                        • #11
                                          My money is on the Cherrios. If I can recall correctly, they have a fair amount of Potassium in them.

                                          Medical "Issues":
                                          IC
                                          GERD
                                          Tachycardia(resting rate is 125-130 )
                                          Medicastions:
                                          Tramadol-as needed (IC)-50mg
                                          Elmiron 200mg twice a day
                                          Levsin .125mg 1-2 pills 4 times a day

                                            Comment

                                            • #12
                                              If you're drinking Dasani, that would be my guess. If I drink bottled water I look for spring water with no additives.

                                              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

                                                • #13
                                                  Dasani water makes me flare and burn... I stay away from any bottled water that has added minerals to it.. and if you look most even have potassium in them...and thats baddddddd..

                                                  Oh btw I drink Aquafina it has never made me flare or burn..
                                                  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

                                                    • #14
                                                      I vote for the Dasani, took me a while to figure out why i would flare when i ate at chickfila and sometimes i wouldnt, found out it was the dasani.

                                                      try not to try many things at once, i know its tough, but its the only way you can figure out what hurts your bladder.


                                                      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
                                                      Lyrica
                                                      Klonopin
                                                      Singulair
                                                      Claritin
                                                      Pyridium
                                                      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

                                                        Comment

                                                        • #15
                                                          Dasani

                                                          As soon as I looked at the bottle I knew it had to be that Dasini..just a gut feeling. As soon As i put two and two together I stopped that bottle and went back to poland springs. i can't drink the tap here it has lots of Arsenic (new hamshire problem ) and chlorine and it doesn't look right.

                                                            Comment

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