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  • Thank you, Donna!

    Things have gotten a little better over the past three days... I can still feel my bladder 24/7, and for about 8 hours each day things intensify. I am seeing a physical therapist next week.

    Comment


    • It sounds like you are moving in the right direction.

      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


      • How have you been, Donna?

        Today I tried the stretches suggested by my PT. I also ate some Chinese cabbage. Soon afterwards, I felt worse.

        I discovered that Chinese cabbage has a diuretic effect on the body. Donna, have you heard of some IC sufferers learning that they need to stay away from diuretic foods?

        Alternatively it might have been the stretches that set it off. I read that sometimes things get worse only to eventually get better. I am uneasy about doing those stretches now...

        I really hope this flare won't be one of those two-week flares...

        Comment


        • The cabbage should be okay --- was it seasoned? There are some ICers who feel they are helped by some herbal remedies that have diuretic qualities. What did you have with the cabbage? You could try mixing a little baking soda in about 1/2 cup water and drinking it, even though it tastes awful, to see if that helps. If you follow it with 1/2 cup of plain water, it helps get rid of the taste. (If you have to restrict salt, soda isn't a good idea.)

          How long after the stretches did you feel worse? You might want to try going a little easier to see if that helps. It can be better to work into new activity gradually. I suggest you ask your PT for some advice.

          I'm actually doing pretty well. I will go for my second Moderna vaccine in three days and I'm eager to have a little more freedom in only two weeks!

          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


          • It was just some raw Nappa/Chinese cabbage leaves with some minimal salt on it.

            I have done two more pt sessions and didn't get worse afterwards. If it couldn't have been the cabbage, then it would appear that I am subject to flares that come in at random.

            I noticed that my flares can be full on for days (usually getting more intense after urination), and then I would urinate and right then and there the flare would be over. This has already happened at least three times. Really strange.

            I am glad to hear that your state was able to assure timely delivery of the vaccine.

            Comment


            • I'm happy about the vaccine too --- I'm well qualified for the first group due to being a cancer patient with diabetes. I'm in Oregon. Will you be able to get yours soon?

              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


              • I live in BC, Canada. I should have it by July. The problem is that the type of vaccine that's used in Canada is only 70-80% effective. Of course the remaining 30-20% will be less likely to Die from COVID.

                A distant relative of mine is now in a bad shape due to COVID. He is only 40, but he is a colon cancer survivor...

                Comment


                • I woke up with a flare.

                  The only trigger I can think of is taking "Bladder Builder" and "Cysto Protect" pills last night. I've been taking them for four days. The first two days were ok. Then the day before yesterday and yesterday I wasn't doing as good.

                  In your opinion, could it be those supplements? Which of them is more likely to be doing this?

                  If you were me, would you push on, or would you quit taking them (and possibly try again in the future when the flare is over)?

                  Thank you, Donna!

                  Comment


                  • One thing you could do is stop both for a few days, then try them again, but one at a time --- especially when I'm dealing with over the counter remedies. I suggest adding them one at a time --- that way if there's a reaction, you will know what caused it. However, I doubt that either of the two is a problem.

                    If you're keeping a food/drink diary, if you post what you ingested the day before your flare, I might be able to pinpoint a problem.

                    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


                    • I ate two foods that I haven't been eating all of this time: some almonds and frozen blueberries. I had almonds earlier, so I am pretty sure that it isn't the almonds. I had blueberries several weeks ago too. I ate them on a number of days and on one of those days I felt worse afterwards. Perhaps that's the second strike against blueberries. I will wait a long time and try them again later.

                      Right now the urgency is minor, and I feel mostly significant pressure. The pressure is bearable, the discomfort resulting from the pressure is mostly psychological - I keep being reminded that I have a serious chronic condition...

                      On
                      https://www.health.harvard.edu/a_to_...ystitis-a-to-z
                      I read
                      "How long interstitial cystitis lasts varies. In some people, it is a chronic condition that lasts for many years, while in others, it disappears suddenly. When the condition disappears suddenly, symptoms may return suddenly, even years after the first illness."

                      I guess it isn't realistic to hope that it "suddenly" goes away by itself... It is ridiculous that the doctors use the word "some people" instead of letting us know the actual fraction of people this happens to.

                      Comment


                      • Hey Bill, I am sorry to read about your troubles...since I'm not on the board regularly, I just read page one and page eight, so forgive me if I'm responding to something that has been resolved. I just happened to notice that your symptoms seem to have started like mine ( although I'm a woman, so no prostate issues! ) Anyway, the first signs that I had any problems was an incredible urge incontinence. I felt like I had to go so badly I thought I was going to have an accident. It was so upsetting that once I made it to the bathroom, I never noticed that my bladder wasn't even that full. These events happened when I was driving long distances drinking caffeine along the way. Thankfully I came upon a kind hearted doctor at the Urgent care for a suspected UTI ( and there was none) who referred me to a gynecologist who prescribed Vesicare which helped my urge incontinence. Still my UTI symptoms occured on and off for years, and even though I told my doctor I thought thecranberry juice she told me to drink more of made it worse, plus all the negative UTI tests, my doctor never suggested IC. Finally a new doctor did, and as soon as I read about it ( and the diet) I knew! (How did my doctors up till then not know?)

                        Anyway, for me, I feel a lot of my unexplained symptoms were solved after awhile on the diet. It was as if I had such an underlying buildup of everything bad ( coffee, alcohol, tons of tomato, a new shellfish allergy, lots of fruit and constant cranberry, soy) , that it took awhile to get it all out of my system, so to speak. Or perhaps just let my bladder heal some. Plus the huge amount of soy in absolutely everything! Now, a little bit if some of those things every so often is okay, because I don't have so many potential triggers in my diet every day. I've completely cut out things like carbonated beverages and most caffeine and citrus so that I can have a "little" alcohol or citrus and coffee "flavored" steamers ( frothed milk). In other words, if I ate the diet I have now when I first was diagnosed, I would still be in a lot of pain. I had to eat a very safe diet for months to get to this point.

                        One last thing...I also had a terrible flare after beginning Bladder Builder. I was really disappointed, but I guess I need to focus on what helps, not constantly wondering why certain things don't. I wish you well in your search for the same.

                        Chris

                        Comment


                        • Thank you so much for your post.

                          My symptom is urgency. I have been on a very restricted diet (rice, cabbage, bread, fish, and mushrooms, and on most days that's it) for about 4-6 weeks.

                          [Before that, I have been consuming tomatoes in Large (e.g., 3 lbs of salad) quantities. ]

                          Thus far I haven't noticed a Big improvement in my symptoms. Moreover, sometimes things intensify/worsen for no reason. Yesterday I didn't try any new foods, and yet today I am feeling worse.

                          You said that it took months before you felt better on this new diet. First of all, how many months was it? Second of all, does what I describe above (fluctuations for no reason, possibly very minor improvement) sound similar to what you experienced before the effect of your new diet "kicked in"?

                          It is also helpful to know that Bladder Builder Can cause problems. Perhaps I am feeling worse today because 4-5 days ago I took that supplement.

                          Thank you for sharing your story!

                          Comment


                          • You are very welcome! For me, only the Vesicare helped with the urgency. A few years ago, I tried another medication instead of the Vesicare and within the week the urgency was back and I had gone into a painful flare for another week. So at least I know the Vesicare is doing its job, and isn't unnecessary.

                            For me, the diet is what has helped with painful spasms and flares. I was on a very restricted diet for probably two or three months. My pain symptoms didn't stop, but just got milder, but every day. I had never had symptoms every day before the diet, so I didn't understand. The urologist I was seeing only wanted to talk about more medication, but I kept pressing him to tell me why isn't this diet at least making it better. Finally he said it was stress, and that clicked for me. I knew stress was a huge trigger, so clearly, though I didn't think so, I was obsessing over food. And maybe even restricting too much? So I kept what I knew to be the worst triggers out of my diet, and relaxed about everything else, and stopped incessantly reviewing my food diary. I had the info I needed, I needed to let it work. I was symptom free on a daily basis probably a few weeks after that. Then I would only have occasional mild pain, and would eat soothing foods until it was gone. I would probably only have a more serious and painful flare once or twice a year, usually due to long travel days and radical diet changes while traveling.

                            I hope this makes sense enough to be helpful. Everyone is so different, but sometimes just one bit of information can make a huge difference.

                            Comment


                            • Thank you for letting me know about Vesicare. It hasn't been on my radar. You haven't had any serious side effects from that, right?

                              Comment


                              • No I haven't. Perhaps something slight at the beginning, but I take it at night. The medicine I stopped it for was Myrabetrig which didn't help me at all. Hope you can find something that helps.

                                Comment

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