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pknw (@pknw)

Permanent SIBO due to removal of ileocecal valve

Digestive Health | Last Active: Nov 3 7:27am | Replies (160)

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@smitcore

rachel_b – I had an emergency surgery and basically lost the same section of bowel as you did, back in 2003. I had major trauma and just went back in to have the adhesions removed to improve life. I'm a week out of that surgery and researching how to resolve my other problem… SIBO. The previous attempts haven't worked Xifaxan or herbal. Latest stool tests from about a year ago showed I had hydrogen and methane producing bacteria, which were better gone after with Xifaxan and neomycin… see an article on it below. I have yet to try it but hope to soon. My insurance changed and Xifaxan went from $15 per 2 week bottle to $1500 per 2 week bottle so I'm debating on when to give this a shot. (turns out as a new user I cannot post links, so search xifaxan and neomycin and it's near the top of Google results)

I also started looking to see if an ileocecal valve replacement was an option but net searches only show research on rats. Anyone know if this technology has been proven?

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Replies to "rachel_b - I had an emergency surgery and basically lost the same section of bowel as..."

Hi @smitcore ! I'm really sorry to hear you're having similar issues — it's so challenging! Did the removal of adhesions help you at all? Just curious.

As far as SIBO goes, I've still been working on fixing mine since posting on here a few years ago. It's definitely been a struggle, and none of the drugs worked for me unfortunately — pharmaceutical or herbal. Did you mean that you already tried Xifaxan and it didn't work, or you're still hoping to try it?

Something that has worked pretty well for me lately is actually a Keto + Low FODMAP diet. My reasoning was that by eating a high-fat low-carb diet, I'm barely giving the bacteria any carbs feed on. And the small amount of carbs I AM giving them are low FODMAP, so there isn't much to ferment. I'm not a scientist or anything and I don't know if this method would be recommended for everyone, but so far it's helped me a lot — more than any other diet or drug. I'd definitely work on it with a dietitian if you're going to try it, though, to make sure you're doing it safely.

Also, focusing a lot on motility — just keeping things moving so that colon bacteria can't back up into the small bowel — has been helpful. My large intestine doesn't move that well ever since my surgery, which I think exacerbates overgrowth in the small bowel without the valve there since it's easy for bacteria to cross over if there's a lot of backed up stool. I actually went to Mayo a few months ago and saw a GI doc there, and although they didn't have a lot of ideas for SIBO, their main suggestion was focusing on motility and really keeping things flushed out. But again, your symptoms might be different, so I'm not sure.

Again, take all of my advice with a grain of salt and definitely run it by a professional, but these are just things that have been working for me lately since I had no luck with drugs.

I'd also recommend a book called "The Bloated Belly Whisperer" that I got recently. Lots of good info in there on a wide range of digestive issues including SIBO.

And, one last thing — two women recently started a podcast, who both had similar surgeries as us: https://www.girlswithgutspodcast.com/ Both of them have had recurrent issues ever since so I'm hoping their podcast might cover some useful solutions once they start putting up more content 🙂

Hope this helps!

Hi @smitcore, welcome to Mayo Clinic Connect. I noticed that you wished to post a URL to a journal article with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam, so allow me to post it here.
– A combination of rifaximin and neomycin is most effective in treating irritable bowel syndrome patients with methane on lactulose breath test https://pubmed.ncbi.nlm.nih.gov/19996983/