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Permanent SIBO due to removal of ileocecal valve

Posted by pknw @pknw, Jul 16, 2017

Is there anyone who has no cure options for SIBO due to the removal of the ileocecal valve? If so, how do you minimize possible long term damage to your intestinal tract? Do you find that digestive enzymes, L-Glutamine, Enteragam or any natural supplements aid in a healthier immune system? if so,
please pass along your best advice. Thanks.

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barbaralbr | @barbaralbr | 1 day ago
In reply to @tiss "I had an emergency right hemicolectomy and ileectomy in 2016 from a cecal volvulus. It's been..." + (show)
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I had an emergency right hemicolectomy and ileectomy in 2016 from a cecal volvulus. It's been a rough ride. I too had problems with chronic SIBO. My GI dr did a hydrogen breath test and it was sky high. He put me on several weeks on xifaxan,(rifaximin) and I did great. But, it always came back after a few weeks. Finally he put me on xifaxan 3x daily indefinitely. I had incredible insurance that paid 100% of the cost. Two years ago I was able to get the dosage down to twice a day and am still doing well although I still have a lot of irregularity flareups but I just live with that. Now, I am on Medicare. It is a tier 5 drug which is the most expensive. We got the best drug plan we could find in order to get this drug covered although it will still be expensive until we meet the catastrophic coverage amount. Xifaxan honestly has allowed me to have a better quality of life overall. I can't imagine what it would be like if I was forced to go off. I suffered with IBS since I was a child -- always had intestinal problems and now I know that I had a bowel deformity (rotated cecum) that wasn't detected until I obstructed, I'm pretty sure my dr prescribed it for IBS since it is approved for that. Without the IV there's just no way to keep bacteria out of the small intestine. I wish all of us who have had to have this surgery would get a special rate for this crazy insane cost medicine!

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@tiss I don't have a known physical cause for my SIBO. After many years of suffering from extreme bloating and gas, I was put on xifaxan 550 two times a day. I took for years and had wonderful results, but my new medical provider doesn't want me to take it at all. He said continuous use isn't FDA approved. As soon as I stop taking it my symptoms return. I've been able to afford it by getting it from a Canadian pharmacy. I was reluctant to do that, thinking it was against the law, but my doctor's office told me it's allowed if they fill out a form saying I can't afford it any other way. Xifaxan is supposed to go generic in a few years, at last!! But that won't do any good if my doctor's office won't give me a prescription.

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