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I have permanent SIBO as the result of removal of my ileocecal valve. Before my diagnosis - and before taking rifaximin - I had malabsorption issues and started a gluten and lactose free diet. After my SIBO diagnosis, I was prescribed rifaximin, taking it every other month for just over two years. I take a calcium supplement every day, as well as iron and vitamin D, and get a B-12 shot once a month. I no longer take rifaximin because it doesn’t seem to reduce my SIBO symptoms any longer. I stick to my diet - high protein, no beans or legumes or cruciferous vegetables, very little fruit or leafy greens - and take my supplements and do my best to treat the symptoms when I have a SIBO flare. The only “cure” for my SIBO is reconstruction of my ileocecal valve which I’m looking into.
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@bapetersen wondering what happened that resulted in no IC valve for you? I also no longer have one due to a cecal volvulous almost 5 years ago. I have been treated multiple times for SIBO with rifaximin and now am on a maintenance dose of 550 mg twice daily. Insurance coverage is a problem of course, and I am waiting for a 50 day supply to be shipped via a Canadian pharmacy. They are backed up, though, and it's taking longer than usual :(. It amazes me that GI professionals know so little about dietary recommendations. They teend to gravitate towards low FODMAP, but tell you not to follow it indefinitely. I have tried a few herbal remedies to treat SIBO in the past with variable results. Abdominal pain, gas, and fluctuations between constipation/diarrhea are my most challenging symptoms to manaage. I use a TENS unit, simethicone and/or activated charcoal caps, and a variety of laxatives, respectively. I am trying to find the right dose of cholestyramine for suspected BAD (bile acid diarrhea), but it fluxuates so much. Definitely a chronic, lifelong, and difficult condition to manage. It helps some to know we are not alone!