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Elmiron & IBS

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  • Elmiron & IBS

    I've read in some posts that Elmiron can affect IBS. I just reduced my Elmiron from 400mg back to 300 mg, as I didn't see any benefit when I went from 300 to 400, but my IBS got worse. Can anyone tell me how long it will take to see a difference? Just curious, and hoping this will help my IBS & allow me to reduce/go off of Zelnorm.
    IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.

  • #2
    I wish I could help you! I just can't tell if IBS is aggravated by Elmiron or not. Most of the time I think not, (for me personally) but then when I have an IBS flare I look for anything to blame. Have you tried emptying the powder into water out of the capsule and drinking the water? The powder is tasteless and if you are reacting to the capsule itself, the problem is over.

    Hope this helps.


    • #3
      is just the nasty topic I was looking for! I can't figure out how to post without replying to someone else. Moving right along...

      On top of ibs, I've been battling ibs, cramps, not able to eat, forcing myself to drink, constant toilet trips for 3wks. Which is ironic bc I saw my gastro. the day before I became ill. Anyway, I saw gastro yesterday and I've got ulcerative colitis, possible c-diff.or ?? and we're testing for lots. Went to lab today and ultra sound mon. bc area around gallbladder extremely tender, that does'nt have anything to do w/ colitis, just a bonus! Happily in the 3 wks. since I saw gastro. i lost 9 lbs.!!!! Which I really needed, just not that way. Started flagl last pm and feeling better, probably bc i've stayed out of bathroom since thurs, except for tinkleing.

      I was scared dr. would hospitalize me bc it's happenned 3x before so I know the ropes. I should have called the dr. sooner and not let myself get so sick. I guess I kept hoping and praying that I'd be well in the morning, just like I do with ic. it just never happenned and I got worse. I live alone and so I take care of myself. It's times like this that I get so blue bc there is not family close or a reeally ggoooddd good friend. I'm mostly stuck inside but do get out for a little while when I can. Sometimes with friends. The walls are closing in on me. Became really ill last jan. and was diagnosed last march. My life as I once knew it is over. I pray for wellness and my life back.

      2 mos. ago my uro upped my elmiron to 400 from 300 and I did have improvement in pain- you know that constant sharp stabbing pain in the lower pelvis? I can say since I started elmiron it has increased my bm's and perhaps some di. You know the words.

      1 test is a stool sample but like I said, haven't gone. I guess that's a good sign. In March I was scoped up and down, normal. I was told that doesn't mean I don't have ulcerative colitis, blah blah plus.....

      So I have stuck to ic diet and rarely, hardly ever stray bc I was already not eating any of that bc of ibs.

      You know it's bad enough to feel crappy, pain from ic without adding anything else.

      I'll keep you informed, Please e-mail me back, anything, perhaps what's worked for you. banghead cussing


      • #4
        Julie, to start a new post, all you need to do is click on "New Topic" --- Then you can give it a title and post away.

        Stay safe

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        • #5
          I have diarrhea dominant ibs and elmiron did upset it. I have tried twice to take it and even with the ibs medicine (levsin er) it really messes me up.

          Good luck! I hope it works for you!
          Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!

          DX: IC - November 2002 after hysterectomy
          Interstim implanted March 2006 - died May 2011
          Interstim replacement June 2011
          Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
          Docs: Pain management doc, urologist, family practice


          • #6
            Hi there,

            I have IBS and was on Elmiron for 3 years, and I didn't find that it made it any worse.

            Take care,
            My story of healing and hope