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  • I Jinks myself

    I have had IC all my life and a neurogenic bladder. I had a lot of IC symtoms that progressivly got worse and worse over time. Although it was suspected I had IC it was not offically till diagnosed till a couple of years ago.

    I spent all last summer on many different Ab'd for a kidney infection. I finally had to get IV ab's for a week to clear it up.

    I wanted to go on a strict diet my Dr. said no until I went 30 days without a UTI acomman occurance for me due to retention issues.

    Well I made the 30 days started the diet End of Sept, with Dr's oaky, but he did warn me the diet could make my IC better or worse, it could go either way. I decided to give it a try, I really wanted to shed the extra lbs gian due to meds and inactivity for IC. I have tried a lot of different meds over the years.

    Anyways the diet worked great I lost all the weight in a few months, I felt better than a long time on the diet, my bladder loved it, I only ate a very small amount of food and only a few different things, not a diet you could live on forever very easily.

    Fast forward a few months I have not regained any of the weight, I reintroduced foods very slowly so I could determine if they bothered my bladder. things were going good.

    Things were going a long good. Then I made the mistake of admitting I had not had a UTI since end of Aug. Then like a fool I tried a very small amount of mango in a salad, stupid, stupid, I know better, anyways it caused a flare. Flares cause my bladder to spasam and lots of pain, this sets off the cycle of increased retention, which causes more urine being left in the bladder for longer periods of time, hence I end up with a UTI.

    My fault just wishing I could go back and have a redo of that day.

    MG
    My are with you all. May you all find a way to peace and joy in your lives.

  • #2
    Do you have anything to take to help relax your bladder muscles. When I start a flare, I take Tums and hyoscyamine --- that combination will usually get rid of it fairly quickly.

    Sending healing thoughts,
    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


    • #3
      HI Donna,
      What is hyasocyamine and what does it do? I have never tried that that, but I have frequent bladder spasms myself! Thank you! Maria

      Comment


      • #4
        It's the generic name for a smooth muscle antispasmodic.

        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


        • #5
          hyoscyamaine

          Hi, Is that the same thing as Prosed DS? I haven't heard of it either. Can you buy it at the drug store or is it perscription? Thanks for the info.
          Diagnosed with IC in September 2010, after suffering from chronic UTI's. I suffer from pretty bad insomnia as well.
          Prosed in the beginning of diagnosis. Cysta- Q helped heal my bladder.
          Amitriptyline (discontinued now, but was very very helpful), and Macrobid to maintain pain relief and get some sleep. Prelief and Marshmallow Root capsules/ or tea leaves, daily to maintain pain relief.
          Lyrica and Pristiq to maintain bladder urgency and help with nerve pain and sleep.
          IC diet is my life now. Stress reduction is a MUST to survive this illness.

          Comment


          • #6
            Thank you for your responses

            Yes Donna I have hyoscyamine (goes by another name in Canada), a couple of other muscle relaxers, and other meds my Dr. thought I may need while way.

            With retention issues, these make it worse so I have to use anything in these catagories sparingly.

            I have been using a small amount of AZO one pill once a day, it really does help, but if I take more then it makes the retension worse.

            Or it becomes a vicious cycle, the retention gets worse so more urine left in bladder, more pressure in bladder, overall increase in discomfort.

            I really have to decided if a few hours of relief is worth what happens afterwards.

            Today I woke in less pain so 5 days on Levo it seems to be kicking in, hopefully by the end of the 7 days on the levo and strick adherance to the diet I will be fine.

            smilesplease: hyoscyamaine: Is that the same thing as Prosed DS.

            I am probably not the best person to answer this ? as meds from US and Canada vary, but I don't believe they are the same thing. Prosed is not available in Canada, I have read so much about it I have been thinking about going to a Dr. in the US to get a rx for it to try it and see if maybe it will not effect my retention. I do believe they are both my rx only but I maybe wrong with that.

            Hopeing for a better day MG
            My are with you all. May you all find a way to peace and joy in your lives.

            Comment


            • #7
              Prosed

              Hi, Prosed DS does not give Me any side affects at all. No retention problems. The only problem is it takes most of a whole day to start working and you need to drink a lot of water to get it working. Hope you feel better soon!
              Diagnosed with IC in September 2010, after suffering from chronic UTI's. I suffer from pretty bad insomnia as well.
              Prosed in the beginning of diagnosis. Cysta- Q helped heal my bladder.
              Amitriptyline (discontinued now, but was very very helpful), and Macrobid to maintain pain relief and get some sleep. Prelief and Marshmallow Root capsules/ or tea leaves, daily to maintain pain relief.
              Lyrica and Pristiq to maintain bladder urgency and help with nerve pain and sleep.
              IC diet is my life now. Stress reduction is a MUST to survive this illness.

              Comment


              • #8
                Does Prosed come in a generic form?
                My Uro says Azo is not good to use long term, but the last time I got Prosed, it was $2 a pill!

                Thanks, Jana

                Comment


                • #9
                  Prosed does not come in a generic form--I wish since it is very expensive. But, I have to have it sometimes! The prescription AZO is not expensive. To me these two RX's work differently on the pain. I take Prosed for flares and prescription AZO for UTI pain. Hope you find relief!
                  Diagnosed with IC in September 2010, after suffering from chronic UTI's. I suffer from pretty bad insomnia as well.
                  Prosed in the beginning of diagnosis. Cysta- Q helped heal my bladder.
                  Amitriptyline (discontinued now, but was very very helpful), and Macrobid to maintain pain relief and get some sleep. Prelief and Marshmallow Root capsules/ or tea leaves, daily to maintain pain relief.
                  Lyrica and Pristiq to maintain bladder urgency and help with nerve pain and sleep.
                  IC diet is my life now. Stress reduction is a MUST to survive this illness.

                  Comment


                  • #10
                    Don't blame yourself MG...I think everyone eats things they know they shouldn't sometimes. Hope you're feeling better.
                    ~Ashley

                    Comment


                    • #11
                      LithEruiel

                      Thanks for your response.

                      I actually am not feeling too well yet, not too sure what is going on now.

                      I have R. kidney pain, dizzy, nauseated, low energy, one sore ear/ sinus/ headpain, feel lousy.

                      I would say the flare part of my problems are gone, bladder feels pretty good, but watching every mouthfull.

                      I am having alot of Abdonmial issues, but this is not too unussall for me when on Ab's.

                      I am also taking diflucan to ward off yeast problems.

                      My Dr. wants me to stay on AB's levo for a couple of more weeks, but on a low dose. He figures we have gotten most of the bug, and wants me to stay on it so it doesn't come back, and be worse and resistant to the levo.

                      So for now I guess I will go with this treatment.

                      I have immunity problems so I always take longer to get rid of bugs.

                      Just feeling sorry for my self, but did this to myself I wasdoing so well I never realized a few mouthfulls of mango could spiral down like this.

                      Mango = flare
                      Flare = increased pain
                      increased pain = retention
                      retention = infection

                      Then I have trouble getting rid of infection.

                      Thanks MG
                      My are with you all. May you all find a way to peace and joy in your lives.

                      Comment


                      • #12
                        Do you think you have another kidney infection?

                        I have a hard time getting rid of infections too.
                        ~Ashley

                        Comment


                        • #13
                          a cheaper way than prosed?

                          Since prosed is a combo drug - look at what is in it

                          http://www.ferringusa.com/files/prosedpi.pdf

                          This is what is in Cystex an OTC drug

                          http://www.cystex.com/Pages/About%20Cystex

                          Cystex is a subset of Prosed. 2 things are missing. One is the hyoscamine which I is a (cheap?) presciption anti-spasmotic. . In fact maybe it is the hyoscamine that is making us feel better when we take prosed. The methamine in these 2 drugs is for infection.

                          So try the hyoscamine - ask your doc. see if that works. if not then try cystex or the 2 together, since that is what prosed is except for the methylene blue.
                          If hyoscamine and cystex doesn't work maybe it is the blue stuff.
                          Cystex did not help me.
                          I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                          Comment


                          • #14
                            Cystex

                            I have been trying Cystex with no luck, but I didn't take the hycosamine with it. I think OTC Azo helps me as anything else but I have the Cystex around because I know I'm not supposed to take Azo all the time. I'm going to look into that combo (or at least have my doc do it!!) Thanks!!
                            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


                            • #15
                              I was formally diagnosed with IC in September 2008 after a long history of suffering from symptoms related to a UTI without actually having a UTI. I think I'm in remission from the initial symptoms that preceded my diagnosis including frequent nocturia, pain and burning with urination, intense feeling of pressure on my bladder without really needing to void etc. Symptoms that sound familiar to all of you.

                              I'm not experiencing pressure on my bladder or the pain and burning sensations that used to accompany voiding. I don't experience a frequent need to void during the day. I sleep pretty well at night unless I drink a glass of wine or alcohol which usually causes me to get up to void one time per night. I do experience mild pain on my left side, front and back, from time to time. I don't need to take medication to treat the pain. It always subsides rather quickly, especially after a good night's sleep. I'm not taking any paid meds and haven't needed instills etc.

                              I discontinued use of Elavil completely after experiencing heart palpitations. It remains to be seen what caused the heart symptoms but I am no longer experiencing these symptoms now that I'm not taking Elavil. I have noticed that I may experience a slight increase in muscle spasms without Elavil but I can manage these too with Ibuprofen etc.

                              I have a history of chronic idiopathic constipation, (surprise?) however, recently, I have begun to experience mild to moderate stomach issues including some indigestion, bowel movements that are incomplete and more fequent throughout the day, general abdominal or stomach discomfort rather than pain. I've heard that it is not unusual for IC patients to complain of incomplete bowel movements which is what I experience now.

                              Per my doctor's advice, I increasd the dose of Elmiron from 200 mg per day to 400 mg per day, taking 2 pills 2 times per day. but I haven't really gotten in the habit of doing this. Still taking 200 mg many days.
                              No Elavil at night. I don't miss it.
                              25 mg of Atarax nightly to the extent that IC might act like an allergic reaction in the bladder.
                              Prelief throughout the day.
                              Cysta-Q one time per day.

                              I attribute some of the improvement in my symptoms to frequent, routine use of Prelief. I'm able to drink coffee again with JavAcid, a product that removes acid from hot (and cold) drinks. I can also drink wine and alcohol on a limited basis with the help of Prelief, Javacid, and alkalizing drops.

                              I'm wondering if anyone has experienced mild to moderate stomach issues related to use of Elmiron, in any dose, including 400 mg per day (which, many days I still take only 200 mg), or frequent use of Prelief, or have your IC related symptoms morphed from symptoms that felt like they were directly related to your bladder to symptoms related to the pelvis or abdomen in general? How do the urinary symptoms change or evolve over time? Do they change or evolve over time?

                              All in all I feel very fortunate. I've added bananas back to my diet. I can eat oranges etc. However, I'm wondering if adding back some of these foods is having a jarring effect on my abdomen or my stomach. No painful urination or pressure on the bladder but rather, just general pelvic discomfort.

                              Comment

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