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.

@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 πŸ™‚ 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 πŸ™‚

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 πŸ™‚ !

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@rachel_b

Hi everybody πŸ™‚ 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 πŸ™‚

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 πŸ™‚ !

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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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@tiss

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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@tiss thanks so much for your reply and the information πŸ™‚ You're right, it's extremely frustrating and I'm just dying to find something that works because it affects quality of life sooo much πŸ™ A couple questions:

Did it take a while for Xifaxan to start working for you in the beginning? I tried a two-week course a couple months ago which didn't seem to make a difference, and now I'm trying it for a month (or longer) to see if it kicks in eventually, but I'm not sure if that will happen or not.

Does the Xifaxan on it's own clear things up for you a lot, or is it only when you also take the Align with it?

Do you pretty much eat what you want or do you also follow diet restrictions in addition to the Xifaxan and Align in order to keep things working?

I'm willing to try any combination of things – just want to find something that works πŸ™‚

Thanks again!

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Rachel,
I think I tried 3 rounds of a month of Xifaxan–550mg 3 x day and it worked well within a week as best I can remember. But SIBO kept coming back so my dr finally said to stay on it indefinitely. I was relieved. Still have flare ups but not like I used to. I started taking it about 9 months after my surgery.

The drs put me on Align 2 months after my surgery (8-22-16). Once a day. Last time I saw my GI he suggested a trial off of it because even though it's 'good' bacteria, it's still bacteria. After 4 days I was a mess. Constant loose stools, discomfort, etc. Went back on the Align and things evened out within a week or so. I take 1 550mg Xifaxan in the morming, Align during the day, and 2 550mg Xifaxan at night. That seems to hold things pretty steady.

As far as food, it's been a real trial. I hardly ate anything the first several months. Red meat is very hard for me to digest so I avoid it unless I'm dying for it and willing to pay the uncomfortable price. I do eat grilled fish once a week although I don't like fish πŸ™‚
Veggies– very soft cooked. Some I tolerate, some I don't. I eat a lot of yogurt, avocado, V8 juidce, peanut butter, eggs, and a little granola and 1 or 2 bottles of Ensure Max– 30gms of protein, 1 gm of sugar. Food is a constant trial and error thing so when I feel brave, I might try something new, otherwise I stick to what doesn't upset my stomach.

I'm not sure if you get a monthly b 12 shot but this is necessary as the body only absorbs b12 through the cecum. So I get monthly b12 shots, and also take sublingual vitamin d.

Please ask any question you want. One of the worst feelings I felt after my surgery was that I was completely alone because I knew no one who had experienced this. I don't know if you are on Facebook, but I found a very good, closed, private group for colectomy patients. I get more good advice from that group than any doctor. One of the best pieces of advice I got from a group member was to see a registered dietician. I did that and she was fabulous. If you would like the name of the group, let me know. The administrator is very careful about allowing only colectomy patients and family members on it. I wish you the best of luck. I wouldn't wish this on anyone but then again, you and I are lucky to be alive. Figuring out how to manage is tough. ❤️

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@tiss

Rachel,
I think I tried 3 rounds of a month of Xifaxan–550mg 3 x day and it worked well within a week as best I can remember. But SIBO kept coming back so my dr finally said to stay on it indefinitely. I was relieved. Still have flare ups but not like I used to. I started taking it about 9 months after my surgery.

The drs put me on Align 2 months after my surgery (8-22-16). Once a day. Last time I saw my GI he suggested a trial off of it because even though it's 'good' bacteria, it's still bacteria. After 4 days I was a mess. Constant loose stools, discomfort, etc. Went back on the Align and things evened out within a week or so. I take 1 550mg Xifaxan in the morming, Align during the day, and 2 550mg Xifaxan at night. That seems to hold things pretty steady.

As far as food, it's been a real trial. I hardly ate anything the first several months. Red meat is very hard for me to digest so I avoid it unless I'm dying for it and willing to pay the uncomfortable price. I do eat grilled fish once a week although I don't like fish πŸ™‚
Veggies– very soft cooked. Some I tolerate, some I don't. I eat a lot of yogurt, avocado, V8 juidce, peanut butter, eggs, and a little granola and 1 or 2 bottles of Ensure Max– 30gms of protein, 1 gm of sugar. Food is a constant trial and error thing so when I feel brave, I might try something new, otherwise I stick to what doesn't upset my stomach.

I'm not sure if you get a monthly b 12 shot but this is necessary as the body only absorbs b12 through the cecum. So I get monthly b12 shots, and also take sublingual vitamin d.

Please ask any question you want. One of the worst feelings I felt after my surgery was that I was completely alone because I knew no one who had experienced this. I don't know if you are on Facebook, but I found a very good, closed, private group for colectomy patients. I get more good advice from that group than any doctor. One of the best pieces of advice I got from a group member was to see a registered dietician. I did that and she was fabulous. If you would like the name of the group, let me know. The administrator is very careful about allowing only colectomy patients and family members on it. I wish you the best of luck. I wouldn't wish this on anyone but then again, you and I are lucky to be alive. Figuring out how to manage is tough. ❤️

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Hey @tiss, thanks so much again for taking the time to reply! I really really appreciate it. Like you were saying, it's so easy to feel alone in all of this so it means a lot to me to have help and support (especially from someone who had the exact same surgery as me, since it's pretty rare!) The other thing that's been a bit disheartening is that the doctors don't seem to know all that much about this problem, unfortunately. My docs are really nice and everything, and I feel lucky to at least have doctors that even believe me (because I know some think this kind of stuff is made up), but at the same time they seem to have run out of ideas and aren't sure what to try next.

I've been working with a registered dietitian for about a year. She actually works specifically within the gastroenterology clinic, so she knows even more about these kinds of issues than a general RDN, which is cool. It's been helpful for learning how to do the low FODMAP diet correctly and things like that, but she said that as far as research goes the best evidence for treating SIBO is the low FODMAP diet with meal spacing and antibiotics. However, since the combination of those things still hasn't worked for me, it seems like she might be out of ideas too.

Right now I'm taking 1 550mg Xifaxan in the morning and 1 550mg at night. I'll ask my doc at the next appointment if we could try bumping it up to 1 in the morning and 2 at night like you're doing, and also trying Align. I'll also ask about B12 shots – the docs haven't mentioned anything about that before and I didn't know that about B12 being absorbed in the cecum, so I never thought to get them.

I'm not on Facebook, but maybe I can ask my boyfriend to join the group for me if that's allowed. If you don't mind sharing the name of it, that would be great πŸ™‚

Thanks so much again for taking the time πŸ™‚ Like you said too, despite the after effects of volvulus surgery, we are definitely lucky to be alive – that's for sure ❤️

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The name of the Facebook group is, "post colectomy… the roller coaster of debilitating discomfort and pain".

Sounds like you are getting good care. Please google b12 injections after loss of ascending colon– it is a must to have. Also, have other vitamin and mineral levels checked. I don't absorb vitamin D well now this the sublingual. You might be able to tolerate the a tablet.

I am not sure why, but when I drop to 2 Xifaxan a day, it doesn't work as well. Three seems to be the magic number for me. The reason I take 2 at night is to allow the Align get absorbed during the day before my night antibiotics. You can get Align over the counter. It's the only probiotic I tolerate. It makes a big difference for me to use it every day.

FODMAP seems to be helpful for many people. I haven't delved into it that far. I eat what I can and what agrees with me. Much of what I eat is FODMAP safe because my diet is fairly limited. The thing about FODMAP is that it probably works great for those who have all of their colon. You and I are missing crucial parts which affects our overall digestion, with, or without, FODMAP.

Please don't let the doctors intimidate you into thinking it's all in your head kind of deal. Doctors are used to being heroes and fixing problems and ours is a management issue– for life. Most aren't so great about that. I ditched my old GI after he threw up his hands and I found a fantastic new GI who listens with empathy, reads articles I send him, tries things that are not typical such as indefinite use of Xifaxan . It's a quality of life issue.

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@rachel_b

Hi everybody πŸ™‚ 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 πŸ™‚

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 πŸ™‚ !

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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.

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@hopeful33250

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.

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Have been on low residue diet, now introducing new foods slowly, as surgeon says I can eat normally since Deloyer procedure. I am trying to still be careful as I think I have some PTSD where certain foods are concerned. Things seem to be going ok, had some ground beef, onions and avacado. Didn't seem to bother me other than bm was a little looser. As I am only 4 weeks out from surgery, not sure what my new normal will end up looking like. I am definitely keeping track of my intake and my reaction

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