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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 | Jan 15 11:50am
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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weathergirl15 | @weathergirl15 | Apr 15 9:18am

Hi. I found my body couldn't tolerate a natural supplement treatment I found online that included using several supplements at once, so here's what I've done to-date after testing positive for both methane and hydrogen SIBO a few weeks ago. Berberine for two weeks, now on second week of allicin (garlic supplement -- which is supposed to cause SIBO die-off). Also introduced recently motility supplement (ginger root plus artichoke extract). Going to keep allicin and motility supplement going for at least another month. If I don't see significant improvement, going to introduce the oil of oregano (Neem). But, I did read Neem can be toxic in large quantities and that you may not need it to cause SIBO die-off, so going to wait and see before I add that in. Have dealt with SIBO/IBS symptoms for 12 years now after being put on a very powerful antibiotic, Keflex. I wish everyone good luck and hope you get some major relief related to symptoms, even if you can't be completely cured. It would be nice to not have to buy extra big bottoms like skirts, shorts, and pants just so they can fit around the distended belly, wouldn't it?

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totavi1948 | @totavi1948 | May 2 9:39am
In reply to @tiss "This is an old post but I found it from searching illeocecal valve and SIBO on..." + (show)
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This is an old post but I found it from searching illeocecal valve and SIBO on google. On August 22nd, 2016 I had emergency surgery due to a bowel obstruction caused from a cecal volvulous. Had a right hemicolectomy with 18" of small intestine removed including the cecum, Illeocecal valve, appendix up to transverse colon which was resected into large intestine. Since then have had problems with SIBO since I have a wide open anastomoses in resected area. No way to keep bacteria from backing up into small intestine. Drs put me on align probiotics 2 months after my surgery which probably made situation w bacteria worse. Anyhow, found a great GI dr who ran some tests and diagnosed off the chart SIBO. Put me on Xifaxan daily and it's a life saver. Today he told me to go off the probiotics since you really don't want bacteria (even the 'good' bacteria in your small intestine. I have been on Xifaxan daily for 1 1/2 years and will be on it lifelong. It's improved the quality of my life 100 fold. Have pretty regular BM with occasional acid bile stools but not very often anymore. I do eat heaithy and stay away from things I can no longer digest like beans. Good luck to all.

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@tiss I had a similar surgery in 1987. Seven years ago I developed a bad infection that put me in the hospital where they started me on Xifaxan. I have been on it now since then. Now my insurance wants a “prior authorization” for renewal even though the xifaxan has been doing its job and has kept the infection from returning. Also, the medication has dramatically improved what was perpetual diarrhea that I suffered since the original surgery. (I used Cholestyramine before the infection but had to stop using it due to painful flatulence and bloating.) Have you or anyone else out there had problems getting Xifaxan? Have you overcome it? Is there a different treatment that works as well?

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