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pknw (@pknw)

Permanent SIBO due to removal of ileocecal valve

Digestive Health | Last Active: May 25 5:53pm | Replies (172)

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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)
-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 🙂 !

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Replies to "Hi everybody :) I know this is an old thread, but I found it when searching..."

Rachel, I can only imagine how frustrated you must be. It's so hard when food and our bodies are at odds with each other. The only thing I can add here is that I have been unable to get off Xifaxan because the symptoms always return– gas, bloating, loose stools, discomfort. So finally my dr got a special dispensation for me through my insurance company to pay for it long term, like indefinitely. I I take 3 550mg tablets a day and it keeps things working right. I also take Align every day. Three is no way for the bacteria to keep from populating in our small intestines since we have wide open anastomoses from our resections. The best of luck to you.

Hello @rachel_b

I would also like to recommend that you read through the Connect discussion at, https://connect.mayoclinic.org/discussion/sibo-diet/ and also https://connect.mayoclinic.org/discussion/tips-for-managing-chronic-small-bowel-obstructions/?orderby=DESC#chv4-comment-stream-header. If you click on these links you can read what others have reported. I would especially like to invite, @thull, @nancybev and @drpepper. They have been actively discussing diet and lifestyle changes as a result of their surgeries.

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?