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.

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I had ileocecal removed along with small intestine resection in 1999. About 2014 started having lots of belching and it has gotten worse with time. I also have a hiatal hernia that has been around several years. I did a sibo test in 2015 and was negative for sibo. Recently visited with GI MD and he wants to redo the sibo test. My question here: Anyone experiencing lots of belching/gas with hernia? Thanks

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@drpepper

I had ileocecal removed along with small intestine resection in 1999. About 2014 started having lots of belching and it has gotten worse with time. I also have a hiatal hernia that has been around several years. I did a sibo test in 2015 and was negative for sibo. Recently visited with GI MD and he wants to redo the sibo test. My question here: Anyone experiencing lots of belching/gas with hernia? Thanks

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Don’t have a hernia but belching and flatulence were /are common symptoms of SIBO for me.

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@guthealth

Don’t have a hernia but belching and flatulence were /are common symptoms of SIBO for me.

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Do you have days where you are belching throughout the day? Are you taking antibiotics? My quality of life on these days is poor.

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@pknw

I had an encapsulated appendicitis which involved my ileocecal valve, small amounts of both the large/small intestines~all had to be removed. SIBO has become a chronic permanent condition for me, as bacteria has no barrier to block transference from the large intestine to the small intestines and back.
Most SIBO information out there seems to address the need for antibiotics, diet and ways to regain a healthy digestive tract~my
questions are to get answers for how to deal with a ‘incurable’ SIBO, in hopes to live a long and healthy life as possible.
I think I need a doctor who specializes in SIBO and/or a nutritionist who deals with SIBO issues. Thanks for your interest.

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You are further down the road than me. Have you had success with the SIBO? What has helped? And anything about repair/replace the ileocecal valve? Thanks

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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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Thanks for this info. I assume the Xifaxan does not have lots of side effects. And long term use ok?

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@drpepper

Thanks for this info. I assume the Xifaxan does not have lots of side effects. And long term use ok?

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If you look back up the thread you can see my story re ileoccal valve and SIBO. I have chronic SIBO due to no IV and resection. I have been on Xifaxan every day for 1 1/2 years and my drs plan is for me to stay on it indefinitely. For me, it's been a miracle. No side effects at all. I felt 90% better within the first week I took it, every time I try to wean off it, SIBO comes back. There's no way to keep bacteria out of small intestine with no IV. Good luck. Might be worth trying Xifaxan no matter what the test says. Without an IV, I don't see how you can't have SIBO. But, I'm not a doctor. Not that they know much more about this than us!

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I had ileocecal valve removed as part of terminal ileum removal in 1999. I did not start having excessive belching for several years (2015). Anyone else have this kind of time delay?

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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)
-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

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, 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.

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