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.

Interested in more discussions like this? Go to the Digestive Health group.

Hey @tiss – thanks for asking! 🙂 Yeah, I am on the Xifaxan twice a day, but I'm not sure how much it's helping? At first I thought it was, but I still have really bad flare-ups pretty often, which is kinda the same as what was happening before (I'd randomly have some good days, but then back to bad again out of nowhere without changing my diet at all). I was thinking of asking my doc at my next appointment if I can bump up to 3 a day like you, and maybe add a probiotic as well. I'm still following the FODMAP elimination diet consistently.

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@tiss

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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I had the same surgery they took out ileocecal valve appendix gallblatter as well as piece of small and large intestine. Please let me know if you find out any fix. Thanks. Steve

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@rachel_b

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 🙂 !

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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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@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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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!

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@rachel_b

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!

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Was able to convince surgeon to perform laparoscopic, first he suggested full open. He did an amazing job and got all adhesions out laparoscopically… still recovering from that as it was done last week. Sore but each day I'm more active.

I've tried Xifaxan a couple times, but only by itself or with herbs. Both times I felt better while on it, but not 100%. Still was a relief for the period, but only lasted about a week after and then all bloating back. I here there is concern with taking it 100% of the time due to bacteria becoming resistant.

I'm hopeful that removing adhesions improves mobility and the cramping feelings I was having (along with the occasional ER visit due to small bowel obstruction from adhesions), but doubtful it'll resolve the bacteria migrating from large bowel to small… maybe a valve replacement will become an option in the future.

Thanks for the insight and links. I'll check it out.

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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

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The flare ups are fueled by products with sugar or turn to sugar like milk products. Regular ice cream is out Proteins are in

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@nova1976

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

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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?

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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?

Jump to this post

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/

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@colleenyoung

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/

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Good article. Treatment for SIBO is not always 100% successful. Xifaxan worked well when I first started with it years ago, then less so. Also took Flagyl. Either one would clear symptoms up, at least for a while. Nowadays, I start taking Pepto as soon as I know it’s back. 3-4 times a day. It works fairly well.
It suddenly appeared today- making me feel sick. After 2 doses of Pepto it has calmed down enough so I don’t feel sick.

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@smitcore

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?

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Dr knew right away from symptoms

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I'm wondering if any of you have used digestive enzymes to help with nutrient absorption. If you have can you please share your experience ?
thanks-

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