How I got off imodium/loperamide. Identify the root cause and the appropriate tool to solve it (FMT, Cholestyramine).

Michael Harrop

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Historically, I had IBS-C and CFS (chronic fatigue syndrome). After taking Rifaximin it switched to IBS-D, plus I couldn't tolerate protein & fat.

The only tool available to me was imodium/loperamide, and I've been taking it for the past decade. It seemed to help with my fatigue as well. Since it's an opioid I was worried about addiction and having to continually increase the dosage. But when I would try to stop it symptoms would worsen and when restarting it I'd have to increase the dosage.

I knew about, and wanted, FMT (fecal microbiota transplant) for many years but didn't know anyone healthy enough or a good source to get it. When I finally found a good source my expectations were too high and misguided due to things I read where people did a single lower-route FMT and cured themselves. So after doing a single lower-route FMT I tried stopping imodium. Symptoms worsened and after restarting imodium I had to increase the dose again.

I knew about Cholestyramine but it's off-label for IBS-D and I wasn't able to get a doctor to prescribe it despite me knowing very well that my problem was bile acid metabolism (protein & fat), and this medication is specifically for this.

I did many more FMTs from 13+ different donors and was finally able to obtain Cholestyramine as well. Some FMT donors allow me to not have to take Cholestyramine. I never tried stopping imodium anymore due to the results from past attempts.

Since it helps with my CFS, someone had asked me "What if you take more?" And I had never tried it because of previously mentioned concerns. I wanted to stop taking it, not take more.

Finally, I decided to try taking an extra dose. It was clearly too much and had no benefit. I did it after accidentally skipping one dose (was up to 3x/day) without apparent issue. In the past I had tried to go cold turkey. It made me think "I have Cholestyramine now. Doesn't that solve the problem I was trying to use imodium to treat?" So I skipped another dose on purpose. My fatigue increased but only temporarily. I continued gradually decreasing the dose over the next few days, and any issues were only temporary. I'm now off it completely and there's no difference compared to when I was taking 3x/day.

FMT > Cholestyramine > imodium.

FMT is not simple. You need a really good donor, most likely you need to do the top-down route, and most people will need to do many FMTs over many months.

The problem:​


Antibiotics killed off the microbes responsible for bile acid metabolism and reabsorption.

Imodium tries to solve the problem by slowing things down and giving the existing microbes and system more time. I still wasn't able to eat protein and fat, and my condition continued to decline, likely due to unmetabolized bile acids continuing to break down the gut barrier (intestinal permeability).

Cholestyramine tries to solve the problem by absorbing excess bile acids. It allowed me to add fat back into my diet, but not protein. Probably because protein can feed pathogens and exacerbate gut dysbiosis if the necessary beneficial microbes are not there to digest food properly and suppress other microbes.

FMT solves the problem by restoring the missing microbes essential for the digestive process. I would highly recommend Martin Blaser's "Missing Microbes" book, and Ed Yong's "I contain multitudes". They are fantastic layperson-friendly books that explain the importance of the complex ecosystem in our guts that regulates every aspect of human health and development. It's probably not the case that everyone's IBS is due to bile acid metabolism problems, but the gut microbiome certainly has a major, if not primary, role in all cases of IBS.
 
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