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Elmiron and GI side effects warning this is a gross one

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  • Elmiron and GI side effects warning this is a gross one

    Ok, so only been on elmiron for about a month now and dealing with diarrhea and occasional stomach upset. Last night I woke up to find fresh feces in my underwear. (im sorry i know..its gross)It must have leaked out while i was sleep. I was wondering what that smell was lol. but I dont know if this is going to happen to me when I go out to public school and ect. and I only been on elmiron for a month. I dont want to give it up so quick but if this is going to keep happening to me then I must. it makes me scared to go out and stuff. I was wondering if these gi side effects go away? or is there anything to prevent the diarrhea? thanks
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

  • #2
    One think you might try is to empty the elmiron capsule into water, discarding the empty capsule. I have heard many times that it's the capsule itself that is the problem. I think it would be a good idea to ask your doctor --- and be sure your doctor knows about the over-the-counter things you are taking.

    Donna
    Stay safe


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    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Just a thought but you could increase your calcium intake to offset the diarrhea effects. I have the opposite problems often so have increased my magnesium intake substantially.
      Also I've read too about emptying the capsule contents into a glass of water will help.
      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


      • #4
        Toonna

        the only otc Im taking is a multivitamin and my doctor knows. I did restart bladder ease only yesterday. but i doubt thats giving me problems cause I started having GI problems within 1.5 weeks of taking elmiron and just tried to bare with them. I tried emptying the capsule and drink it in water. It made my stomach hurt. I think that my gastritis is also making it hard to take elmiron. I have an appointment with my gastro this week. maybe he can increase my dosage of omeprazole. but it definately doesnt help having gastritis-thanks anyway I stick with it as long as I can.
        Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

        I have moderate-severe IC

        Currently stopped taking all medications due to pregnancy

        Comment


        • #5
          I too have diarrhea all the time- usually in the morning right before going to work. I have tried taking it out of the capsule but that doesn't help too much.
          I have told my doctors but with all the other medications for other health problems that I have they want me to stay on it. I have with the doctors approval lowered my dosage from 6 to 3 a day and that somewhat helps.


          To CMCLien: I think I am going to increase my calcium intake, how much do you take? let me know. thanks.

          Comment


          • #6
            same thing happening to me on elmiron as needsrelief

            been on it a month.. and having the same digestive issues.
            Newly IC diagnosed as of February 2011.

            Medications I'm on that seem to work:
            Zoloft- one once a day
            Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

            Failed Meds:
            Elmiron-after 4 months,digestive side effects got to be too much
            tramadol-allergic
            DMSO treatments(5-6)
            probiotics

            THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
            AROMATHERAPY-candles,incense
            Village Naturals Aches and Pains Peppermint Bath Salts
            Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

            ACUPUNCTURE/HERBS
            Significant pain relief so far.

            MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

            Add me on facebook Angela Hasic

            ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
            Lord, make me an instrument of your peace;
            where there is hatred, let me sow love;
            when there is injury, pardon;
            where there is doubt, faith;
            where there is despair, hope;
            where there is darkness, light;
            and where there is sadness, joy.
            Grant that I may not so much seek
            to be consoled as to console;
            to be understood, as to understand,
            to be loved as to love;
            for it is in giving that we receive,
            it is in pardoning that we are pardoned,
            and it is in dying [to ourselves] that we are born to eternal life.

            Comment


            • #7
              So ladies, are you saying one of the side effects is diarrhea? Does it happen daily? I got a prescription for Elmiron but want to know what to expect first before I shell out $$ for something that's doing more harm then good.
              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


              • #8
                side effect

                I already had IBS so yes it has increased the loose stool effect somewhat but for me not so it is unmanageable. If you tend toward constipation I would say it is a good side effect. I also have this sort of bubble sensation at the top of my stomach sometimes but not sure if that is elmiron. I'm losing my prescription coverage so I'll have to shell out the bucks. After 4 months I don't feel better bladder wise, but atleast my hair which is already thin is not falling out any more than it already does (so far). Everyone responds differently so you may be in the 30 to 60 percent of people it helps. Don't know until you try, unfortunately.
                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


                • #9
                  I've been on it about 5 days, woo hoo! And for me who is normally constipated I have NO diarhea yet so thats a good thing. I might actually be able to cut down on my magnesium pretty soon, we'll see.

                  Unless the side effects are unmanageable the potential benefit of my bladder healing outweighs any side effects which are mostly GI. I am taking omeprazole twice a day to offset the stomach upset and/or take it with a little food like a cheesestick.

                  purple- funny you should mention the palpitations I have been feeling those too but I haven't read anything about that as a side effect. Could just be coincidence but I posted on this today. At least feeling kinda shakey. I'll see if they go away.

                  Also, definitely worth trying to offset with calcium, have any of you tried that to see if the diarhea goes away?

                  I'm going to do everything I possibly can to stay on this medicine until I know if it will help me.
                  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


                  • #10
                    i decided to take it out of the capsule and mix w/ water and it helped immensely. now i just have gas and occasional constipation. better than having to deal with the diarrhea.
                    Newly IC diagnosed as of February 2011.

                    Medications I'm on that seem to work:
                    Zoloft- one once a day
                    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

                    Failed Meds:
                    Elmiron-after 4 months,digestive side effects got to be too much
                    tramadol-allergic
                    DMSO treatments(5-6)
                    probiotics

                    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                    AROMATHERAPY-candles,incense
                    Village Naturals Aches and Pains Peppermint Bath Salts
                    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                    ACUPUNCTURE/HERBS
                    Significant pain relief so far.

                    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

                    Add me on facebook Angela Hasic

                    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                    Lord, make me an instrument of your peace;
                    where there is hatred, let me sow love;
                    when there is injury, pardon;
                    where there is doubt, faith;
                    where there is despair, hope;
                    where there is darkness, light;
                    and where there is sadness, joy.
                    Grant that I may not so much seek
                    to be consoled as to console;
                    to be understood, as to understand,
                    to be loved as to love;
                    for it is in giving that we receive,
                    it is in pardoning that we are pardoned,
                    and it is in dying [to ourselves] that we are born to eternal life.

                    Comment


                    • #11
                      Thank you all for the helpfull tips! I'm going to get my prescription filled and start on Elmiron today. So sick of being in pain all the time, plus now I developed what they call "vulvodynia" maybe it's because I sit all day and the pants rub against my vagina....dunno but my uro said this commonly occurs with IC because it's an inflammation.

                      The stupid Cystoprotek is not doing anything! Well, maybe something but it's not enough hence I'm resorting to traditional drug therapy. Hope the Elmiron kicks in quick.
                      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


                      • #12
                        Have you tried the DH aloe vera? I think once the elmiron kicks in I will probably stop the cystoprotek as I also don't think it has helped and I have been on it a long time, (might be good for my joints though but keep taking the aloe as it is an anti-inflammatory. It "might" help with the VV, hard to say and unfortunately you don't know until you try. I think they have a first buyers offer thats 4 for the price of 3 or something like that.

                        Its been a week now, stomach symptoms have calmed down now that I'm taking the elmiron with omeprazole and the emptying the capsule is a good idea too, I'll have to try that.

                        I know its only been a week but I've had 3 good days in a row! yay! All in my head? coincidence? I don't know but here is my theory which has absolutely no medical basis just seems to make sense to me. The milder the condition the faster it will work, the more severe the longer. So in a severely compromised and irritated bladder lining the longer it takes to coat and soothe and the more there is to be repaired internally by the body. Thus the opposite would be true of a less compromised bladder lining and would explain why some people respond after weeks and others not until 3 mo, 6 mo etc.

                        My doctor told me to keep a symptom log so that I can tell if its doing anything. I have to admit when I feel better then I tend to push the diet. There are so many things I miss eating, especially yogurt, so I had one yesterday. Its sad when you feel guilty for eating yogurt! I would never add soda back in, I am much more strict with beverages because they effect me strongly.
                        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

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