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  • Terrible flare up!

    I've been feeling good for the last two weeks so I decided to have some Starbucks. First day was just mild burning and I ignored it. This morning, I had another coffee and boy...did it give me bladder pains! It was so bad, I was in tears and had to leave work.

    I guess caffeine is off the limits forever back to drinking that marshmallow tea...grr...no energy from that.
    Dg. with IC 2/15/10

    Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.

    Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.

    Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea

  • #2
    Have you tried any of the lower acid coffees? The puroast is good and I love flavored coffee which they make too.
    Maybe its just because you did it two days in a row? And maybe Starbucks will only be a once in awhile type of thing for you.
    Cindi


    Gelnique for frequency/urgency - works great
    Macrobid after sex
    Prilosec, continuous birth control pills
    synthroid .088mg, mucinex-d, restasis

    Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

    Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

    IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
    AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
    AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
    Great treatment flowchart on page 19 of the pdf

    Comment


    • #3
      The problem is that I've been very, very depressed and nothing seems worthwhile anymore...been eating the wrong foods too which I'm sure made things worse. I'm gonna lay off the coffee and other acidic foods for good. This whole IC thing is making me miserable, my life has changed and I hate it!
      Dg. with IC 2/15/10

      Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.

      Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.

      Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea

      Comment


      • #4
        You had a couple of good weeks so that is very promising! You probably just went overboard with the diet and coffee. I'm certainly not one to judge on that because when I feel really good I push the diet everytime too. Who would ever have known that pushing this diet means I sneak a yogurt and some cocoa almonds. Kinda ironic to feel guilty about that right?

        Did you decide not to try elmiron? I didn't see it in your list of meds.
        Cindi


        Gelnique for frequency/urgency - works great
        Macrobid after sex
        Prilosec, continuous birth control pills
        synthroid .088mg, mucinex-d, restasis

        Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

        Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

        IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
        AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
        AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
        Great treatment flowchart on page 19 of the pdf

        Comment


        • #5
          Hi Cindy,

          I decided against Elmiron since it's so expensive, sorry but I don't have extra $500 to spent. I ***** & moan when I have to pay $78 for 30 pills of Vyvanse and already spend about $200/month for my other meds/supplements
          Dg. with IC 2/15/10

          Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.

          Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.

          Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea

          Comment


          • #6
            Ouch! Thats too bad your insurance won't cover it. I have to pay 130/mo or so for mine which is expensive enough. Maybe a generic will eventually come out.
            Cindi


            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
            Great treatment flowchart on page 19 of the pdf

            Comment


            • #7
              I did the same thing with Starbuck's coffee. After my two months of pt work and feeling like I was normal again I went and had Starbuck's coffee a few days in a row. I was feeling like I needed a lift, but boy was I sorry. I've heard that Starbuck's coffee is the most acidic coffee out there due to how many times it is roasted- which I guess gives it the robust flavor but sure adds the acidity. I've also heard that cold pressed coffee (which you can make at home from beans) takes out the acid. Not absolutely sure how much acid it takes out, but if anyone out there knows it would be good to hear.

              Comment


              • #8
                tea

                Originally posted by 425runner View Post
                I've been feeling good for the last two weeks so I decided to have some Starbucks. First day was just mild burning and I ignored it. This morning, I had another coffee and boy...did it give me bladder pains! It was so bad, I was in tears and had to leave work.

                I guess caffeine is off the limits forever back to drinking that marshmallow tea...grr...no energy from that.
                marshmallow root tea? Does it help with a flare during? I've never heard of it. Something online or maybe CVS? I'll try agything when I'm in one.....

                Comment


                • #9
                  I have never liked coffee so I didn't have to give it up. However, I can drink Starbucks lattes. I get a vanilla grande with a single shot of decaf. It satisfies me and gives me a pick me up, even though its just decaf. I also can drink chai lattes but not too many days in a row. I had a 2 day flare this week and I think that may have contributed.

                  Comment


                  • #10
                    I love Starbucks coffee, too, but can only drink it if I have been having a good few weeks. My flares seem to come and go, but when they are here, watch out. So it's a rare treat.

                    Comment


                    • #11
                      Originally posted by 425runner View Post
                      I've been feeling good for the last two weeks so I decided to have some Starbucks. First day was just mild burning and I ignored it. This morning, I had another coffee and boy...did it give me bladder pains! It was so bad, I was in tears and had to leave work.

                      I guess caffeine is off the limits forever back to drinking that marshmallow tea...grr...no energy from that.

                      I'm also wondering where did you get that Marshmallow root tea? Asian store? I have find corn silk tea in asian stores in the little tea packages, tried that for bladder with no good results. I have heard of marshmallow root capsules.
                      In memory of my beloved best friend in the whole world! Timmy (West Highland White Terrier)
                      11/24/04-9/5/2011


                      God Bless,

                      Anna

                      Comment


                      • #12
                        You can get marshamallow root on line. It comes in a bag, loose tea.
                        Last edited by ICNDonna; 04-14-2011, 01:25 AM. Reason: Removed sales site.
                        Dg. with IC 2/15/10

                        Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.

                        Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.

                        Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea

                        Comment


                        • #13
                          Hi Anna, this is totally off subject, but I notice your name Luvterriers. I had a rat terrier, Bogart,up until last November when he passed away. I loved that little dog so much! What a great personality he had. We got him at a rescue place and someday soon, we will look for another.

                          Comment


                          • #14
                            Retention is a huge problem

                            When IC first started for me I had frequency like crazy and moderate pain. Now it seems like every medication I try causes me to STOP urinating. Pain medication (my pain is now very severe), anti-depressants, and it seems foods. Also, I am becoming MORE sensitive to things I could take in the past. Does anyone have any suggestions? I can take NOTHING for constipation without severe bladder pain. I can't take anything for GERD because of severe bladder pain. If I take more pain medication to help with the pain I can't pee. Please, does anyone have any suggestions? What do you do when you've tried all the conventional treatments and nothing works ? I NEED an anti-depressant, but they ALL interact with the one pain med I am currently taking (but thinking of going off of) that I'm not allergic to (I'm allergic to morphine, fentynal, percocet). I throw up, break out in hives, etc. I need a pain med and an anti-depressant has anyone had this problem? Help....
                            Teresa

                            We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

                            Comment


                            • #15
                              Snowden1 -

                              Sorry to hear about your problems, but what I think you need is a low dose Klonopin 0.5 mg twice a day to calm down your bladder. I'd also suggest drinking marshmallow tea since it's soothing to irritated tissues. Are you taking any nutritional supplements? PM me if you'd like some suggestions.
                              I hear ya about the anti-depressant, I went through the entire line of SSRI's -it was terrible, until I finally setlled with Wellbutrin XL. As far as foods...is there anything that doesn't cause you pain? If so, stick with eating just that for a while.

                              Hugs
                              Dg. with IC 2/15/10

                              Other conditions: depression, ADHD, lactose intolerance, celiac disease, chronic fatigue syndrome, IBS-C.

                              Medications I'm on: Vyvanse 70mg, Xanax 1 mg as needed, Wellbutrin XL 150 mg, Vicodin 5/500 as needed for pain, Microgestin 1/20 continuously.

                              Supplements I'm taking: Chondroitin Sulfate, N-acetyl-glucosamine, MSM 3gr/day, Pancreatin, B-5, Ester-C, and marshmallow root tea

                              Comment

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