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  • Q's about constant pain, Prelief, & OAB meds.

    Hi everyone,

    I think I may have IC-- symptoms cont. after a UTI & kidney infection back at the end of Feb. Cleared of many possibles through tests: urine cultures, ultrasound, CT scan, upper GI, colonoscopy, exams by GP and GYN. Finally saw a uro 3 weeks ago.

    Q's: I am not in tremendous pain (I am sorry for those who are) I do have pain, pressure and frequency. It is effecting my life as I am only working and doing little else, but I am getting worn down by the fact that it does not go away. Is this true for many of you? Or is it only constant when in a flare? Am I feeling this way because my bladder is just not yet "calmed down?"

    The uro told me to take Prelief, but he didn't say how often. Only when I might be eating something acidic or I don't know what's in something, or should I be taking it with every meal? I want to find out what bothers my bladder, but the Prelief seems to help, so how will I know what I need to avoid? Or should I get my bladder calm first, before figuring out what bothers it?

    The uro put me on Sanctura XR. Can't say that it helps a lot, but it did take some of the pressure type of pain away and weirdly, seems to have made me more aware of the specifc pain in my bladder (where before everything hurt all over my whole lower abdomen.) I am worried that maybe the OAB meds. are causing a bit of retention and maybe that's why I still have that "full" feeling as well as the constant pain. It's worse when I've gotten past an hour and a half between going pee, but doesn't really feel tons better once I've gone. Any opinions about what might be going? Anyone else have this kind of experience with OAB's?

    The uro gave me a list of what to avoid and I have been using that as well as the IC diet here. I do think caffeine was a big factor, but have found that the decaf tea is still irritating, so I'm down to water, or hot water and honey. (I do not like milk to drink, unfortunately and also have IBS, so I don't do great with dairy.)

    I do not go back to the uro for another 5 weeks! It's frustrating, but I will be off the Sanctura in 2 more weeks (got samples for 5 weeks worth) and I am guessing he wants to see what difference it makes, and I know it will take time with the diet... it just seems a long way away, which is why I'm asking for advice/opinions until I go back. I want to have good info about what has been happening with me during the 8 weeks between uro appointments. I am taking notes for each week, how I'm feeling, etc.

    Thank you for any insight or opinions.
    very mild symptoms since at least Jan. 2010
    (But wonder if I've had it longer due to some signs, looking back...)
    painful symptoms since Feb. 2011
    diagnosed with IC Aug. 2011


    Medications: Elmiron, Elavil

  • #2
    Hi, otter721 ~ Welcome to the ICN and I'm very sorry you've had to even think of IC but this is an excellent group of understanding, thoughtful and educated people to help you through the rough times.

    I myself remember those first months/years of the agony of "bladder totally out of control". I was so exhausted I remember scribbling "I want to sleep, I want to have my life back, I want to eat/drink normal", etc on my initial paperwork with my Uro/Gyn. Since then my symptoms are much more under control, but I do have times, more frequently lately, where things just go haywire again.

    About the Prelief....My PA has suggested I take it before I eat/drink pretty much anything (even water) because I get such painful frequency/urgency. I'm one of the fortunate ones that I think it helps. I also take Pyridium to help when things get rough. Again, one of the lucky ones who have positive experience with this med.

    I do believe an "angry" bladder will cause lots of your symptoms. I see your doc recommended the IC Diet. Staying away from acidic foods is a real plus. I stuck to the Friendly side for over a year and still pretty much today. When I do get thoughtless or wreckless, I pay for it and have to start at square one once again. Sometimes I just don't know why I take the chance. I was so very good that first year+.

    Instillations have also helped my symptoms as well as Physical Therapy for my PFD.

    Everyone seems to be different with symptoms, causes of flares, successful treatments. It's usually a time of trial and error until you find what works best for you. I do use a warm rice bag on my bladder area to help soothe things. I'm sure you'll get a lot of suggestions as others see your post or you explore the ICN topics.

    If you see that the Sanctura is working, can you ask the doctor for some more samples while you wait for your appt? If you're still feeling such discomfort, would you doc be willing to see you sooner?

    I do believe my doctor and his PA are well educated with IC and act immediately to relieve my pain/symptoms....a true blessing.

    Please keep us posted and prayers your symptoms lessen soon.
    Never heard of IC til suspected....Never knew so many suffer from it. Praying for a cure. I've found answers...so can you...keep the hope.

    11/2007 IC Symptoms began during recovery of surgery for bladder susp & hysto: painful/urge/freq urination up to 50 times a day, pain walking, even water hurts.
    8/2009 Susp IC; 1/2010 Treatment began; 2/2010 Diag PFD, PT, Surg remove mesh; 5/2010 Surg, 2nd bladder repair, vag vault/sm int prolapse repair, IC confirmed in surg; 7/2010 Diag Candida Esophagitis, Gastritis, Diviticulosis, Gallstones,
    8/2010 Surg gallbladder
    TREATMENTS (updated 4/15)
    IC Diet since 8/2009 (Able to vary 4/15)
    Heparin/Lidocaine/Bicarb/Kenalog Instills 1xDay
    Aloe Vera Capsules, (2) 2xDay, Loratadine 1xDay
    Pantoprazole, Prelief, Pyridium up to 3xDay, Premarin Cream 3xWeek
    *DISCONTINUED since feeling better: Celexa 10mg daily*, Fiber supp*,
    Gabapentin 12/2011 worked well *, Macrodantin 100mg after instill*, Probiotics*, PT-PFD*, Valium Vag Suppositories: Cyclo/diaz/lido, 10/5/62.5mg *
    PROB MEDS: Elavil, up to 50mg 1/2011 ret&hbp, Urelle ret, Vesicare ret

    Comment


    • #3
      think I may have IC-- symptoms cont. after a UTI & kidney infection back at the end of Feb. Cleared of many possibles through tests: urine cultures, ultrasound, CT scan, upper GI, colonoscopy, exams by GP and GYN. Finally saw a uro 3 weeks ago.

      Q's: I am not in tremendous pain (I am sorry for those who are) I do have pain, pressure and frequency. It is effecting my life as I am only working and doing little else, but I am getting worn down by the fact that it does not go away. Is this true for many of you? Or is it only constant when in a flare? Am I feeling this way because my bladder is just not yet "calmed down?"
      ***My symptoms are similar to yours. I had terrible pressure and frequency the first month and a half after this began. During this time, I pretty much stuck to the "safe" foods on the IC diet list. I think it helped a great deal.

      The uro told me to take Prelief, but he didn't say how often. Only when I might be eating something acidic or I don't know what's in something, or should I be taking it with every meal? I want to find out what bothers my bladder, but the Prelief seems to help, so how will I know what I need to avoid? Or should I get my bladder calm first, before figuring out what bothers it?

      **I think this will be trial and error for you--exploring what your dietary triggers are. I use Prelief when I know that I'm dining out or when I have the occasional glass of white wine. After some exploration, my primary diet triggers seem to be chocolate, coffee, caffeine, and carbonation.

      The uro put me on Sanctura XR. Can't say that it helps a lot, but it did take some of the pressure type of pain away and weirdly, seems to have made me more aware of the specifc pain in my bladder (where before everything hurt all over my whole lower abdomen.) I am worried that maybe the OAB meds. are causing a bit of retention and maybe that's why I still have that "full" feeling as well as the constant pain. It's worse when I've gotten past an hour and a half between going pee, but doesn't really feel tons better once I've gone. Any opinions about what might be going? Anyone else have this kind of experience with OAB's?

      The uro gave me a list of what to avoid and I have been using that as well as the IC diet here. I do think caffeine was a big factor, but have found that the decaf tea is still irritating, so I'm down to water, or hot water and honey. (I do not like milk to drink, unfortunately and also have IBS, so I don't do great with dairy.)
      **Most days I stick to water as well. However, I discovered rooibos tea (herbal, no caffeine) and it's great. Tastes a lot like black tea to me. I drink it in the morning as a coffee replacement.

      I do not go back to the uro for another 5 weeks! It's frustrating, but I will be off the Sanctura in 2 more weeks (got samples for 5 weeks worth) and I am guessing he wants to see what difference it makes, and I know it will take time with the diet... it just seems a long way away, which is why I'm asking for advice/opinions until I go back. I want to have good info about what has been happening with me during the 8 weeks between uro appointments. I am taking notes for each week, how I'm feeling, etc.

      **Let us know how the Sanctura works for you. My next step (I think) is to try Atarax. I feel most of my symptoms are triggered by allergies and increased mast cells.

      Thank you for any insight or opinions.[/QUOTE]
      March 2011-Symptoms began
      May 2011-Tentative diagnosis by OB/GYN
      October 2011-Confirmed diagnosis -- IC/PFD

      Current treatments:
      Elmiron- 300 mg (Began 12/11)
      Hydroxyzine- 50-75 mg (Began 7/11)
      Tizabidine- 2mg 3xTID, if needed (Began 12/11)
      IC Diet-Began 5/11
      Pelvic Floor Therapy-Began 12/11

      Current Supplements:
      Cystoprotek
      Magnesium
      Fish Oil
      Biotin

      Comment


      • #4
        I should also note that I've been taking Cystoprotek for approx. 3 months and Desert Harvest Aloe for a little over a month. I think both have helped my symptoms tremendously. I'm definitely having more days when I feel close to normal than not.
        March 2011-Symptoms began
        May 2011-Tentative diagnosis by OB/GYN
        October 2011-Confirmed diagnosis -- IC/PFD

        Current treatments:
        Elmiron- 300 mg (Began 12/11)
        Hydroxyzine- 50-75 mg (Began 7/11)
        Tizabidine- 2mg 3xTID, if needed (Began 12/11)
        IC Diet-Began 5/11
        Pelvic Floor Therapy-Began 12/11

        Current Supplements:
        Cystoprotek
        Magnesium
        Fish Oil
        Biotin

        Comment


        • #5
          Ginger,

          Thank you for your prayers. I am sorry to hear your symptoms are giving you more trouble lately. I am grateful to have found this network and forum. From all that I have read since my GP suspected IC back in March, this group is indeed educated and caring, everyone seems to sincerely care and want to help others.

          I plan to try taking Prelief often to see how much it helps by having it in my system throughout the day. (I am already on Zantac twice a day for acid reflux.) I am following the IC diet but it took some time to remove caffeine (tea) since I was concerned about withdrawal headaches. It's been about a week since I've had only water. The diet seems to be making a difference, though I am not sure yet how much. I do think it's a matter of time... I've felt bad for 4 months, so I don't think I will feel lots better in just a few weeks. Though I can't help wondering if/when thing will calm down, even though I know there is no way to guess when that might be.

          Thanks for the suggestions for the Sanctura and the urologist. I have only been to him once, so no idea how he or his office will respond to a request for more samples, but it's something to keep in mind. I hope to develop a good relationship with him and I am happy to hear that your Dr. and PA are so wonderful!

          Thank you so much for your thoughts and prayers. I will pray for you as well.
          very mild symptoms since at least Jan. 2010
          (But wonder if I've had it longer due to some signs, looking back...)
          painful symptoms since Feb. 2011
          diagnosed with IC Aug. 2011


          Medications: Elmiron, Elavil

          Comment


          • #6
            It took quite a while for my bladder to calm down after eliminating regular tea. Probably a couple months. I really do feel that the black tea was worse than coffee on my bladder.

            Comment


            • #7
              BiblioGrrL,

              Thank you for your reply. We seem to have a lot in common-- I am pretty sure some of my triggers are the same as your primary ones. Of course, my bladder is still not calmed down at all, so I haven't yet figured it all out yet...

              Thanks for the rooibos tea tip. I will try that once things are calmer. I really like "regular" tea, so it's nice to know there is something that I may be able to drink that will come close to that.

              That's great that the Cystaprotek and the aloe (forgot it's brand name) are helping you so much. I have looked into them and was disappointed in the cost... not that they are any worse than other natural supplements, but it is frustrating that things that are often better for us also cost more than the prescription drugs, particularly if you have a drug plan, as I do... oh well... it's something else for me to consider and I appreciate you mentioning both.

              I will let you all know how the Sanctura works. I am hoping I can soon figure out if it's causing mild retention or not.

              Thanks again!
              very mild symptoms since at least Jan. 2010
              (But wonder if I've had it longer due to some signs, looking back...)
              painful symptoms since Feb. 2011
              diagnosed with IC Aug. 2011


              Medications: Elmiron, Elavil

              Comment


              • #8
                Earthlady,

                It's good to know that tea was an issue for you. (Although I'm sorry that it is/was.) I drank coffee also, but only a few times a week at most. Black tea, on the other hand, I was drinking, either hot or iced, about 4 times per day, and not 1 measuring cup worth-- a mug, or a tall glass. Are you able to drink decaf black tea? My uro's list noted that I could drink decaf tea but I feel it is an irritant to my bladder, as others have commented. Beverages are one of the things I found most difficult on the IC diet. Water seems to be the only thing that I'm sure is OK, and then I'm not even positive about which water!
                very mild symptoms since at least Jan. 2010
                (But wonder if I've had it longer due to some signs, looking back...)
                painful symptoms since Feb. 2011
                diagnosed with IC Aug. 2011


                Medications: Elmiron, Elavil

                Comment


                • #9
                  Sad to say that even decaf black tea bothered my bladder. I took prelief with it but I think there was just too much acid in the tea for even the prelief to eliminate. I could have tried prelief with the tea and then tums afterward but I got to the point that it was just too much trouble and too much hassle to figure out how to drink it so I just stopped it all. Mint tea and chamomile were ok. My bladder has been calm and I've been pain free for quite a while now so at some point I may try it again. I really do think that eliminating coffee and all regular tea was a big factor in getting my bladder to calm down. Along with no citrus and wine of course. I can however have a pear martini now and then-whoo hoo!

                  Comment


                  • #10
                    Earthlady,
                    Are you seeing a urologist or just caring for yourself by using the info here? just curious-- so you don't need to answer. I was just wondering about your situation and if you are waiting for a diagnosis like I am. Also, I envy you your pear martini! I can have no alcohol-- haven't had any for 20 years. I suppose I will need to give chamomile and mint teas a try sometime... I have never liked any herbal teas but after drinking only water, my tastebuds may feel differently! Glad to know that your bladder has been much calmer lately!
                    very mild symptoms since at least Jan. 2010
                    (But wonder if I've had it longer due to some signs, looking back...)
                    painful symptoms since Feb. 2011
                    diagnosed with IC Aug. 2011


                    Medications: Elmiron, Elavil

                    Comment


                    • #11
                      Yes I'm seeing a uro now. This is my third one, and so far I've decided to stay with her as she has been treating IC/PBS people for a long time and is really flexible with any suggestions I have. The mint and chamomile tea was an acquired taste, but after drinking only water for so long anything will taste good! The Better Bladder Book has a good list of teas but unfortunately a lot of them taste like dirt. I also drink almond milk which I like a lot and my bladder does too.

                      Comment


                      • #12
                        Check out these amazing reviews from ICers on Prelief's web site:

                        http://www.akpharma.com/prelief/testimonials.html

                        Comment


                        • #13
                          Hi!

                          Just wanted to jump in here for a minute!

                          Our suggested usage for Prelief is to take 2 Prelief tablets with each meal and snack. More can be used when needed. Prelief is taken with all meals, regardless of foods eaten, because while some foods are obviously acidic, other acidic foods are not readily recognizable as such.

                          Betty Corson
                          Customer Service
                          AkPharma Inc
                          1-800-994-4711
                          For additional information on Prelief, please call 1-800-994-4711. AkPharma is a proud sponsor of the IC Network Message Board.

                          Comment


                          • #14
                            Betty, I am taking Prelief before meals. I don't generally have snacks, but I do have a couple of extra cups of coffee throughout the day.Should I take Prelief with them also?

                            Comment


                            • #15
                              Prelief useage

                              Thanks for the Prelief info. But it really doesn't help one to determine which foods are triggers, does it? That is what I'm struggling with now-- take the Prelief for a lessening of my symptoms or do not take it so that I can figure out what makes it worse. I am trying the "all the time" method right now and will probably go off it for a day or two and compare. (I am not in severe pain, thankfully, just a constant pain.) As someone not yet diagnosed, my use of Prelief may need to be different than someone else's.
                              very mild symptoms since at least Jan. 2010
                              (But wonder if I've had it longer due to some signs, looking back...)
                              painful symptoms since Feb. 2011
                              diagnosed with IC Aug. 2011


                              Medications: Elmiron, Elavil

                              Comment

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