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Long-term Lomotil use

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I’ve struggled with IBS-D since childhood (I’m mid-30s now). I had a colonoscopy and many tests run years ago and everything came back normal so they just told me I had IBS and sent me along. My IBS is worst in the morning and I struggled to maintain employment. Eventually I resorted to taking 4 Imodium when I woke up and more as needed throughout the morning. I decided to go see the doctor again and they are planning to do another colonoscopy. I had many stool tests and of course everything is normal. The only abnormal test I’ve ever gotta back is that my IgA is quite elevated, but my doctor seems unsure of what that means. Anyway, she ended up prescribing me lomotil and it has been a miracle drug for me. I only need to take one dose in the morning and my IBS is gone for 24 hours. I’m just unclear on if I can take this long term. My doctor said “as needed” but for me it’s needed daily unless I don’t plan to leave my house. I really don’t want to have to go back to Imodium because it didn’t work as well and I needed higher doses. Has anyone had success with lomotil long term?

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  • 9 months later...

Hi icyflower, it sounds awfully similar to my case. I've had IBS-D for over 30 years....from late teens now to midlife. I've tried every kind of supplements, anti-cramping, anti-depressants, and anti-anxiety. I've also tried acupuncture. The first thing that worked was imodium but it's always been difficult to find a balance. It takes a few hours before it works on me and if I take too much, I get constipated. Liquid imodium works better than tablets, but it's hard to find. Imodium also didn't do anything for anxiety (being away from a bathroom), which started accompany my IBS and has gotten worse with the years. About 15 years ago my new doctor prescribed Lomotil. I loved it and been taking it since. Not only does it help with IBS but it also lessens my anxiety. My doctor told me I can take it regularly. However, it concerns me that it's considered a controlled substance and can cause dependency. So I only take it when I need it, which is every other day or so. I try to wean myself off it now and then. I'm sure you've heard of one side effect being tiredness, which is true. If I take Lomotil in the morning I'll be extra tired by the time night arrives. If I'm on Lomotil and don't get 8 hrs of sleep at night, it's hard to get up. My doctor said I can take both Imodium and Lomotil, which I do when necessary, such as traveling, partying, or going to a new place where I don't know if there's a bathroom or not. Most days, I alternate Imodium and Lomotil. Using Lomotil long term works, but it's not optimal. However, for me, Lomotil is the drug that's worked best. I wish there was an "improved" Lomotil that didn't make me as tired or foggy headed. I need more clarity in my head. Until I find that drug, I'll keep taking Lomotil. I try not to take more than one dose of 2 tablets in one day because of the dependency risk. One time I took double dose by accident, which felt great, but it also made me worried (the drug euphoria effect). My need for Imodium and Lomotil is mostly tied to stress and anxiety. The more stress, the more meds I need. During the COVID lockdown when I was working from home, I hardly ever took IBS meds. It was great! But I also enjoy going out!! Anyway, great to find someone in the same situation and hope I was able to provide you with anything helpful.

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