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Permanent SIBO due to removal of ileocecal valve

Digestive Health | Last Active: Apr 2 6:54am | Replies (191)

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@julynn

I am new to this forum but have been finding some of the comments very helpful and interesting. I had a tumor by my appendix and near the cecum so had a surgery to remove it and of course, they had to remove the ileocecal valve. But it was not until starting in 2020 when I started getting symptoms that affected my quality of life - terrible grumbling noises in my intestines, chronic diarrhea, nauseous, and just feeling lousy. After my research and a great GI doctor we came up with the diagnosis of SIBO. Now I must say that I live in a country where testing cannot be done for SIBO so my Dr decided to just give me the treatment for it and see if it worked. Well, like many of you, I took Rifaximin plus several other antibiotics and each time, they worked for a while but then all symptoms returned, sometimes in a few day, a couple of weeks and one time after a month. But as you can see, without that valve in our bodies, this will be a permanent situation.

Well I got tired of that treatment so decided to do more research to go the natural route, which I am now on. I figure, if I need treatment all of the time, I might just as well go this route since the side effects will not be so harmful to my body as antibiotics. I started 3 weeks ago with Berberine Complex, Oil of Oregano and Betaine HCL. I also take Saccharomyces Boulardii. I have greatly improved, but am I totally symptom free? Not exactly, but much better. I understand from my research though that I cannot stay on Oil of Oregano permanently, so am going to try other natural supplements to switch them around. So it seems as this is going to be a trial and error journey and an expensive one at that!! My GI Dr says that this is the most expensive ailment a person can have and believe him! Well, this is just the start but as I progress along in my journey I will post my updates on what is not or is working for me. But as I can see each person is different and what works for some may not work for another. But I will share what I have discovered!

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Replies to "I am new to this forum but have been finding some of the comments very helpful..."

Thank you for sharing. I appreciate everything I learn on this forum.

Hi @julynn and welcome to Mayo Clinic Connect. I have heard of the positive effects of Oregano oil. They say it kills bacteria by breaking their cell membrane. Research tells us that oregano oil works to reduce different kinds of unhelpful bacteria, but leaves the friendlier Lactobacillus and Bifidobacterium alone.
Since you started this regimen, are you having your doctor follow the progress?

Can you alternate between xifaxan and oil of oregano? Your dr got it right-- it's a financial hardship having this ailment and trying to keep it in check.

julynn, this link may offer some material that may be of interest. Thiamine (vitamin B1) plays an major role in the brain, vagus nerve and gut and requires magnesium to become bioactive. Activated thiamine is needed to activate B6. The B vitamins work better together. The first link begins about it and SIBO. Anti thiamine factors diminish or destroy thiamine. The stuttersence link contains a comprehensive list. Likewise, magnesium can be lost due to pain, stress and others listed in the krispin link. Finally, boron offers interesting benefits one of which is magnesium preservation. The last link contains more about boron. Always consult your health care professional before using any supplement.
https://www.eonutrition.co.uk/post/when-sibo-ibs-constipation-are-just-unrecognized-thiamine-deficiency
https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html
https://www.krispin.com/magnes.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712861/

Thank you so much for your time and help! So, just the GI dr and your research, correct? I may just try to do this all myself! I am encouraged by many posts here, finding I take many of the things listed. Encourage to get some testing done to check certain levels of things... again, thank you!