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  • #16
    You are so lucky to have your hub. Gosh, there are marriages that have broken up over this. Give him a big hug from us, and yes, sometimes that is all the romance you need. An understanding, empathetic spouse. Jill, wife of Bob

    Comment


    • #17
      I'll give mine a big hug if you tell Bob to give you one!!!
      Katie-46 yr old female dx'd with IC after 15 years of symptoms off and on long term antibiotic use, GERD,IBS and now IC diet, gallbladder removed, endometrial ablation w/tubes tied
      Lexapro-20 mg
      Aciphex
      Ambien-as needed
      Percocet-7.5 up to 3 per day as needed
      Valium-10 mg x2 per day
      Phenergan-1 at night
      Prelief w/everything
      Now recovering from acute pancreatitis

      Currents treatments that help somewhat:
      Heating pad
      Hot baths
      Ice
      Being VERY still while lying down with legs elevated

      Comment


      • #18
        It was so hard for me to give up coffee, but let me tell you Teeccino has saved my life! It is both acid FREE, not just low acid and caffeine FREE! The best one is the chai which does not have any acual tea in it what so ever but some spices make it taste sooo good! This does not taste like a coffee alternative but is just as good as coffee! Try it! Yum!
        Current Treatments & Meds:
        Vesicare
        Hydroxyzine
        Elmiron
        Tramadol (When flaring)
        Prelief (Before Meals)
        Macrobid to prevent infection

        Lifesavers:
        Rescue Instills 2x per Week (Lidocaine, Sodium Bicabonate, Heparin) upon first diagnosis.
        Teeccino (If you love coffee, you need to try this! Acid Free & Caffeine Free!)
        Carbob Chips (w/Mint Ice Cream)
        My boyfriend of 5 years
        My kitty Chloe <3
        Photography (www.facebook.com/ashleylpriestphotography)

        Comment


        • #19
          About the coffee substitute, I have just been dx'd, but used these for years with good results and no pain. TEECCINO (teh-CHEE-no) is a caffiene free, non acidic blend that you brew like coffee and is a medium roast .They are in your local health food stores and YUMMY. Here are the names and their ingredients so you can see for yourself. ALMOND AMARETTO =contains=Organic carob ,organic barley, organic chicory, dates, almonds, natural amaretto flavor, organic dates, figs. VANILLA NUT =contains= Organic carob, organic barley, organic chicory, dates, almonds, figs, natural vanilla extract, natural nut flavor. They have a JAVA FLAVOR that i like but says it has coffee flavorings so??? JAVA FLAVOR =contains= Organic carob, organic barley, organic chicory, dates, almonds, natural coffee flavor, organic figs.
          • History :
          • 2012 - July 6th -Diagnosis IC/Irritiable Bladder + Chronic Lumbar Pain.
          • 2012-2011 - Steven Johnson Syndrome/ Erthemia Multiform.
          • No medications of any kind were allowed during my 1 1/2 year healing process with this diease.
          • 2007-2005 - Bladderstone Removal and Kidneystones.
          • 1990- Gallbladder stone/ Gallbladder Removal.
          • Medications:
          • Elmiron - 100mg 3x daily
          • Elavil - 10mg @ bedtime
          • Atarax - 10mg @ brdtime
          • Loritab - 5.5mg as needed

          Comment


          • #20
            smashley, i didn't know that they made chai!?! We don't have that here, but you are right they ARE AMAZING AND TASTE LIKE STARBUCKS!!!!!!!!
            • History :
            • 2012 - July 6th -Diagnosis IC/Irritiable Bladder + Chronic Lumbar Pain.
            • 2012-2011 - Steven Johnson Syndrome/ Erthemia Multiform.
            • No medications of any kind were allowed during my 1 1/2 year healing process with this diease.
            • 2007-2005 - Bladderstone Removal and Kidneystones.
            • 1990- Gallbladder stone/ Gallbladder Removal.
            • Medications:
            • Elmiron - 100mg 3x daily
            • Elavil - 10mg @ bedtime
            • Atarax - 10mg @ brdtime
            • Loritab - 5.5mg as needed

            Comment


            • #21
              Been there!

              YUP! Been there and know how you feel. We are all here for everyone to vent to. If I didn't have my pals here at the IC Network - you'd have to scrape my brains off the ceiling - my head would explode!!!
              Sometimes Pero and all that just doesn't cut it for me. What I do is drink Kava mixed with Javacid. You can get Kava on Amazon. It is real de-acidified coffee. Javacid is an additive you put in the coffee which further reduces the acidity (you can get it at javacid.com). Not sure if you've tried acid-free coffees with success before, as opposed to the herbal stuff. I usually drink a cup of Kava (with Javacid) every morning with no problems, but I am one lucky lady - my problems with IC aren't as bad as most. The stuff just rocks. I added it to tomato soup and had no problems. It was a small cup of soup, though.
              I realize that this was started in 2011 - so I hope you're better by now!!! Just sayin' though: If you are throwing up I suggest low sodium broth though. Coffee is rough on the innards. Weird what our bodies want sometimes. Sometime I crave a hot dog so bad I could scream.
              Good luck to you and get some rest!!
              Last edited by Grandmav; 08-01-2013, 11:30 AM. Reason: add comments and take off the quote (made it too long)
              Live well - be HAPPY!
              GrandmaV
              Taking:
              NOTHING!!! I have done so well on the diet that he took me off all meds and I feel great!
              Hours of Prayer per day
              One day at a time
              Time to be grateful for what I have


              Philippians 4:13 for Pete's sake!
              Fur therapy
              and grandchild hugging therapy (Highly recommend)

              I am so thankful for my friends on the IC support network. My success has been made possible by YOU!

              Comment


              • #22
                Oh yes coffee, glorious coffee. Ironically teecino and all the other substitutes flare me worse. I really wish I could say I didn't miss it so much but I do. I can have an espresso with lots of milk once in a great while but regular coffee is too acidic.
                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

                Comment


                • #23
                  Originally posted by Grandmav View Post
                  YUP! Been there and know how you feel. We are all here for everyone to vent to. If I didn't have my pals here at the IC Network - you'd have to scrape my brains off the ceiling - my head would explode!!!
                  Sometimes Pero and all that just doesn't cut it for me. What I do is drink Kava mixed with Javacid. You can get Kava on Amazon. It is real de-acidified coffee. Javacid is an additive you put in the coffee which further reduces the acidity (you can get it at javacid.com). Not sure if you've tried acid-free coffees with success before, as opposed to the herbal stuff. I usually drink a cup of Kava (with Javacid) every morning with no problems, but I am one lucky lady - my problems with IC aren't as bad as most. The stuff just rocks. I added it to tomato soup and had no problems. It was a small cup of soup, though.
                  I realize that this was started in 2011 - so I hope you're better by now!!! Just sayin' though: If you are throwing up I suggest low sodium broth though. Coffee is rough on the innards. Weird what our bodies want sometimes. Sometime I crave a hot dog so bad I could scream.
                  Good luck to you and get some rest!!
                  Good news! Kava instant coffee is available in most large grocery stores.

                  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


                  • #24
                    P.S. I can have ONE cup of Kava --- it's not the best tasting coffee going, but it's passable and if you haven't had coffee for a while, it tastes pretty good. I suggest that if you try it, you have only a small amount, like 1/2 cup, until you are sure your bladder isn't annoyed by it.

                    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


                    • #25
                      I just picked up some Kava (haven't tried it yet). From what I read on the label it doesn't seem much different from real coffee and just taking Prelief along with it. ??? Is it even safer to take Prelief with it anyway? Better for the bladder as a special occasion treat rather than an everyday thing? Any chance this with a tiny piece of white chocolate will ever replace my old ritual of real coffee with a tiny piece of super dark chocolate?

                      Comment


                      • #26
                        I'm able to enjo Tylers acid free decaffeinate coffee.
                        Tracy

                        Comment


                        • #27
                          How often do you find yourself using Ambien?
                          Love the person, hate the sin!

                          Comment


                          • #28
                            I was also of the impression that Kava is just a milder brew/blend of regular coffee. Is it from Hawaii or am I thinking of something else? I could have sworn that my grandma used to drink "Kava" coffee from Hawaii. I don't know about the safety of Prelief. It hurts my stomach really bad and others have reported the same issue so I would maybe try Prelief on its own first in case you have a similar reaction.
                            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

                            Comment


                            • #29
                              Could the Hawaiian coffee your grandma drank be Kona coffee?

                              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


                              • #30
                                I know how you feel. I reeaaaally wish I could have coffee. I only have mild IC, so sometimes I'll have some - no more than 12 oz, mixed with lots of almond milk. And I have to make myself be good with the rest of the IC diet so I don't have a flare. I'm usually okay with that.

                                Comment

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