Permanent SIBO due to removal of ileocecal valve

Hi everybody 🙂 I know this is an old thread, but I found it when searching for information related to SIBO and a missing ileocecal valve and wondered if anybody on here could help. Thanks in advance for reading 🙂

Like @tiss, I had a cecal volvulus when I was 24, back in 2012. I had an emergency right hemicolectomy removing about a foot of small and large bowel all together, including the ileocecal valve. They resected my large and small intestine - I'm not 100% sure where exactly - but somewhere around that whole right side area where the ileocecal valve would have been. Ever since my surgery, I've had persistent trouble with extreme bloating from eating that lasts for multiple days, nausea, loss of appetite, and just an overall ill feeling stemming from my gut. I've been working with a gastroenterologist and a GI dietitian for the last year, but unfortunately we haven't made any progress. At one point, they did an x-ray while I was extremely bloated to hopefully gain some clues, and saw that my stomach was totally full of air and very enlarged (they wrote in the notes that I had gastric distension). This led them to do an endoscopy to rule out a gastric outlet obstruction, which came back negative. They did a colonoscopy shortly after, and everything looked mostly normal except for a spot of irritation they found on one section of the colon. They tested to make sure it wasn't Crohn's, which it wasn't. We still don't know what that irritation was or if it's related to my symptoms. The worst symptom for me is the bloating/distension, and I haven't yet found anything that relieves it. Often times I'll just eat one meal in the morning, and get so full of air/pressure that I'm physically unable to eat for the rest of the day. Once it gets like that, anything else I eat just makes it expand more and more. Here are the things that I've tried so far, under the guidance of the dietitian and gastroenterologist:

-Xiaxifan (for SIBO)
-Cipro (for SIBO)
-Strict low FODMAP diet (I'm still currently following this just for good measure though it doesn't seem to solve the problem)
-Specific Carbohydrate diet
-Low residue diet
-Dicyclomine (gut anti-spasmodic)
-IBGard
-Alpha-galactosidase
-Meal spacing (4-5 hours apart)

I've also kept a detailed food diary of everything I eat and the symptoms, but there doesn't seem to be any real rhyme or reason to it. Like the original poster, I'm wondering if this is just chronic SIBO due to the fact that I no longer have an ileocecal valve and therefore nothing is stopping bacteria from populating my small intestine. It was encouraging to hear that Xiaxifan worked for @tiss, but I still haven't had any luck with it. I'm currently on it again and we are going to try it longer term to see if it eventually kicks in, but I haven't noticed any difference so far. I guess it could also be something that's not SIBO at all, which could be why antibiotics haven't worked, but so far neither me or the doctors have been able to figure it out.

Any ideas would be greatly greatly appreciated. Thank you so much 🙂 !

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?

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!

I had a massive amount of adhesions wrapping around appendix I’ve had multiple abdominal and intestinal surgeries arising from complications of a RNY bypass. I The area around illeocal valve was telescoped into each other I was salivating and dry heaving and had extreme bloating after every meal. Drs resectioned effected areas and that’s when I discovered SIBO. I keep it under control with
Xaflaxin and Flagal The flagal is an antibiotic for the bypassed part of the stomach while the xaxflaxin works on the bacteria in the intestine. Two years out
The flare ups seemed to subside Good luck

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?

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/

Thanks Nova. How did you find out you had SIBO? You take a breath test? What is your Xifaxan dosage that keeps the bacteria under control?