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Help! I need an IC medication!

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  • Help! I need an IC medication!

    OK....My IBS has gotten in such an uproar lately that diet is not enough. I am watching what I eat but I am always cramping and in pain regardless of what I eat. I had a stomach virus about 2 weeks ago which set me off and I can't get it to calm down. I wake in the morning even before I get out of bed and have low belly cramps. As soon as I take a bite of anything the cramping starts again. My BM's haven't been normal either. Let's not even go there.
    When I went to the gastro guy about 2 months ago he gave me Paine Forte which turned out to be an IC nightmare for me! I wound up with the worst urinary retention. I never experienced such a thing! I could not urinate for an entire day and the pain was unbearable! I also woke up totally dry! My eyese were glued shut and my throat was so dry that it hurt to eat. That also took an entire day of drinking water to get better. So, I guess it's safe to say that I won't be trying that drug again but because of this experience I am afraid to try anything else. I remember tyring Levsin a few years ago but if gave me migraines. As a kid I took Donnatol but don't know how I would do with it today as my IC has gotten worse. Any ideas on what to tyr to stop the spasms. I think I tried Librax too but not sure how I did with it. I know I need something but not sure what to ask for. I put a call into my urologist but haven't gotten a call back yet. I wanted to ask her what she would recommend given my IC history and my Pamine Forte experience.
    Anyone have any suggestions?
    Thanks...........I really need some input on this.I.m going crazy with this damn bloating after eating, then cramping and pain. It's just not calming down!!!!
    Mel


    IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

  • #2
    I was going to suggest simple OTC Immodium and see how that does. It shouldn't dry you out as badly as the RX's and it works for me to stop that viscious cycle, most of the time anyway. I'm sorry your IBS is so bad right now...if it's not the IC then it's always something else!

    I have taken Librax before, but that was well before my IC. I do remember it helping those awful cramps though.
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

    Comment


    • #3
      Thanks Sandy. My uro's office called and we talked for a while. She thought it would be better for me to try a shorter acting med like Levsin SL. I am going to start with half of a pill under my tongue and see if it helps. I don't really have diarhea.....just lots of cramping ALL THE TIME....before I eat, after I eat...when I wake-up. I get so bloated after each meal and experience abdominal pain. My BM's are not the way they used to be.........but at least they are not water!(don't want to get to graphic here....haha). I also have a history of adhesions....and Zelnorm made me worse. I actually think I have an adhesion somewhere on the lowere right that is causing me problems. Sometimes I feel like there is a knife stabbing me there or even a pulling sensation. When the adhesion is acting up there is even more swelling and pulling after a BM. I am sure that sometime in the future this will have to be adressed again but for now I am trying to keep things moving easily with diet so as not to aggravate the adhesion but my IBS is pretty angry too! So there's actually a few things going on.
      As usual, thanks for you input.
      Mel


      IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

      Comment


      • #4
        Mel,
        Sorry that you aren't feeling well and can't get the right meds. I hope that your doc comes up with something soon to help you out and relieve your symptoms.

        Claudia

        ~Claudia

        "A heart is not judged by how much you love; but by how much you are loved by others."
        ~ The Wizard of Oz

        "If I ever go looking for my heart's desire again, I won't look any further than my own
        back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


        Comment


        • #5
          Mela: I have to agree with Sandy, but maybe try Immodium Advanced Chewables...the advanced chewables work faster than the caplets and the advanced version has simethicone to help with the bloating and gas.
          I actaully jsut had an *episode* 15 min. ago and 1 immodium adv chewable did the trick.

          Fennel tea I have to say helps with the bloating, gas discomfort really well. I hate the way it tastes (kinda like black licorice) but add enough table sugar and its tolerable.

          I hope you find something that works!
          Hugs,
          y.
          Somewhere there's a reason /Why things go like they do /Somewhere there's a reason /Why some things just fall through /We don't always see them /For what they really are /But I know there's a reason /Just can't see it from this far /Maybe I don't like it, /But I have no choice /I know that somewhere, /Someone hears my voice / I thought I knew it all /I thought I had it made /How could it end this way? /I thought I knew Somewhere there's a reason /Why things don't go my way /Somewhere there's a reason /That I cannot explain /Just like the change of season, /Just may not be my turn /But I know there's a reason, /The lesson's mine to learn

          Comment


          • #6
            Thanks Yvette, I already take chewable gas-x tablets and they seem to help. My attacks are mostly cramps and bloating. Lately, when I go I have more bloating and pain afterwards. I seem to stay bloated until things calm down which is why I think adhesions are involved. Once there is movement, things get flared up from the activity and more gas gets trapped and causes more bloating. Just my theory.....or is this the way IBS feels like for everybody? I mean after you go shouldn't you be flat and calm???? With me I have more bloating and pain...hmmmmmmmm. I just don't know anymore.
            I did fennel tea for a while and I actually like the flavor but my bladder cannot tolerate anything anymore! The only hot beverage I can drink is hot water with honey.
            I don't think I need immodium at this point because I am not having diarhea......just loose.
            The thing is I am hungry and want to eat but as soon as a bit of food goes in there the cramping starts. Sometimes water alone does it. This morning I had such bad cramping when I woke that I had sharp pains shooting way down there! This is nuts!
            Oh well.........I feel like a freak talking about these things but between the IC and the IBS it gets to be too much. No one really understands....and I don't even bother saying much but it is hard to sit through a dinner with other people.
            I took half a Levsin SL before dinner and I think I am handling it farely well....other than my heart beating a little faster and feeling a little buzzy I think I am OK....but right after I ate I had to run to the bathroom and now I am sore and swollen.
            I hope that this med will get things to simmer down. If not....on to the next med.....but never again Pamine Forte!!!!!
            Mel


            IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

            Comment


            • #7
              Mel,

              You mentioned whether it's normal to be bloated after going, that you felt you should be "flat and calm." I don't know about others, but I've been freakishly bloated for weeks now, and going doesn't seem to improve it whatsoever...

              I hope you can find something, whether OTC or from your doc, that will help you feel better and not have all that cramping after eating or drinking even water. You've got enough to deal with already, right!

              ~Claudia

              "A heart is not judged by how much you love; but by how much you are loved by others."
              ~ The Wizard of Oz

              "If I ever go looking for my heart's desire again, I won't look any further than my own
              back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


              Comment


              • #8
                Thanks Topcop. I'm not sure what is going on because I am experiencing bladder pain now too. Nothing out of the ordinary for dinner...so it can't be that. Could it be the Levsin? Oh ......I did have half a cookie (biscotti) that had some dried cranberries (something I never have!) but when I had one the other night I was OK....hhmmmmmm ...it was only tiny amount...not like a whole bowl of fresh berries! I'm very thirsty too....so I'm drinking a lot of water....another levsin side effect????
                OK...gotta get back to my hot water bottle....I hope this passes soon. Let's see if this happens again when I take my levsin tomorrow.
                Mel


                IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

                Comment


                • #9
                  I guess it could be the cranberries, but you would think that since you had them the other night with no problem and only had a bit, it wouldn't bother you. But, I cannot even drink a SIP of soda or coffee with caffeine because it's my biggest trigger.

                  I have never taken that med, so I would check it out online and see what the side effects are and if your symptoms match up with that. I would keep getting as many fluids as you can and if you continue to see symptoms, let your doctor know in case you need to change meds.

                  ~Claudia

                  "A heart is not judged by how much you love; but by how much you are loved by others."
                  ~ The Wizard of Oz

                  "If I ever go looking for my heart's desire again, I won't look any further than my own
                  back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


                  Comment


                  • #10
                    I'm sucking down water as we speak (write)....I guess I won't know what triggered it until I take another dose and see what happens.

                    I just checked the ingredients on line....and it is sulfated which is something that I don't do well with either. Anything sulfated or citrated causes me to flare.....

                    The thirst and rapid heart rate are side effects..........damn I am so sensitive!

                    So, I guess i'll have to wait this out and see what tomorrow brings. I already asked my dr to mail me a script of Donnatol just in case the Levsin SL was not for me. I might give the donnatol a try when I am feeling up to it and see how I make out with it.
                    Thanks for the support.........
                    Mel


                    IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

                    Comment


                    • #11
                      I'm no doctor, but if you are having the rapid heartbeat as well, you might not want to continue with that med...I would call the doc as soon as you can, maybe you can just stop taking it until your other script arrives. It's not worth messing with your heart!!

                      Claudia

                      ~Claudia

                      "A heart is not judged by how much you love; but by how much you are loved by others."
                      ~ The Wizard of Oz

                      "If I ever go looking for my heart's desire again, I won't look any further than my own
                      back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


                      Comment


                      • #12
                        I think you are right Claudia. I am not going to take it today. My bladder is in such pain! I'm pretty sure it was something in the pill that irritated me. I'm not even going to call the dr because there is already another script on the way. I have this problem with sensitivities to so many meds that after a while it's frustrating to keep telling them that I can't tolerate a med for one reason or another. I'ts also upsetting to hear their reaction...."oh you are the most sensitive patient we have"....or.... "boy, you can't take this or you can't take that".....or ...."I don't know what to give you because you are so delicate"!!!

                        I am going to stay home and rest today. it hurts too much to even get dressed and get out. I hate when this happens! I hate to have wasted days!
                        Just venting here. Thanks for tryng to help! Hope you have a good day!
                        Mel


                        IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

                        Comment


                        • #13
                          I just checked the ingredients to donnatal online. I don't think I should take this drug either! It has some of the same ingredients(hyoscomine sulfate) with the addition of a phenobarbital, atropine sulfate and scopolomine sulfate! There's no way my body can handle this! I would be totally dried out!
                          I don't want to go through the same thing as when I took the Pamine Forte.....another type of scopolomine that totally dried me out and caused retention! I was so dry that I couldn't even swallow food!! OH NO!! I am panicking here!
                          I think I am going to go back to my natural approach with more probiotics. They seemed to help when I was taking them consistently.
                          Mel


                          IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

                          Comment


                          • #14
                            Please keep us posted on how your bladder feels without the meds. Also, don't think of it as a wasted day, think of it as a deserved day of rest and recovery. Watch some tv, read a book or magazine, just do something that makes you feel good and relaxed.


                            Claudia

                            ~Claudia

                            "A heart is not judged by how much you love; but by how much you are loved by others."
                            ~ The Wizard of Oz

                            "If I ever go looking for my heart's desire again, I won't look any further than my own
                            back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


                            Comment


                            • #15
                              Hi Claudia,
                              Thanks for the encouraging words. My bladder is less sore today but not back to my "normal". I am watching what I eat and drinking plenty of filtered water. I started back on my probiotics last night ....so let's see how long that takes to kick in. I did not take the meds and will not fill the prescription of the one that is due to arrive. I've researched the ingredient to a few other antispasmotics on line and have 2 that I might consider trying agian at some time in the future. They are not sulfated so I my bladder may be ok with them. For now, less is better and I'll have to work around the IBS more naturally.
                              I hope you have a good day...........thanks again.
                              Mel


                              IC, PFD, IBS, Allergies, Chronic Migraines, CVID, Fibromyalgia, CFS, Numerous Laporoscopies for Endometriosis and Adhesions, Hysterectomy 2002

                              Comment

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