← Return to Permanent SIBO due to removal of ileocecal valve

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pknw (@pknw)

Permanent SIBO due to removal of ileocecal valve

Digestive Health | Last Active: Jan 19 10:58am | Replies (165)

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@tiss

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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Replies to "I had an emergency right hemicolectomy and ileectomy in 2016 from a cecal volvulus. It's been..."

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.