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← Return to Permanent SIBO due to removal of ileocecal valve
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Permanent SIBO due to removal of ileocecal valve
Digestive Health | Last Active: 22 hours ago | Replies (231)Comment receiving replies
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!
Replies to "I had an emergency right hemicolectomy and ileectomy in 2016 from a cecal volvulus. It's been..."
What insurance company did you have?
@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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I suffered the same history as you. Lifelong bowel problems that plagued me until a volvulus caused me to have a right hemicolectomy with removal of the ileocecal valve in 2015. My quality of life deteriorated and I became more and more ill. Chronic diarrhea, abdominal pain, bone pain, muscle weakness and ternderness, and brain fog. In the last 6 months I have had so much blood work with nothing showing up positive. Finally my PCP referred me to a gastroenterologist that read my surgery history and labs and colitis on CT and said you have bacterial overgrowth due to your hemicolectomy with ileocecal valve removal. I have been on 3 different antibiotics. When I am on them I get better but when the course of antibiotic is finished the diarrhea returns.
I just met my gastroenterologist last week. I see him in 4 weeks to determine what course to take from there. He said patients with SIBO usually remain on treatment the rest of their lives.