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.

@julynn

I am new to this forum but have been finding some of the comments very helpful and interesting. I had a tumor by my appendix and near the cecum so had a surgery to remove it and of course, they had to remove the ileocecal valve. But it was not until starting in 2020 when I started getting symptoms that affected my quality of life – terrible grumbling noises in my intestines, chronic diarrhea, nauseous, and just feeling lousy. After my research and a great GI doctor we came up with the diagnosis of SIBO. Now I must say that I live in a country where testing cannot be done for SIBO so my Dr decided to just give me the treatment for it and see if it worked. Well, like many of you, I took Rifaximin plus several other antibiotics and each time, they worked for a while but then all symptoms returned, sometimes in a few day, a couple of weeks and one time after a month. But as you can see, without that valve in our bodies, this will be a permanent situation.

Well I got tired of that treatment so decided to do more research to go the natural route, which I am now on. I figure, if I need treatment all of the time, I might just as well go this route since the side effects will not be so harmful to my body as antibiotics. I started 3 weeks ago with Berberine Complex, Oil of Oregano and Betaine HCL. I also take Saccharomyces Boulardii. I have greatly improved, but am I totally symptom free? Not exactly, but much better. I understand from my research though that I cannot stay on Oil of Oregano permanently, so am going to try other natural supplements to switch them around. So it seems as this is going to be a trial and error journey and an expensive one at that!! My GI Dr says that this is the most expensive ailment a person can have and believe him! Well, this is just the start but as I progress along in my journey I will post my updates on what is not or is working for me. But as I can see each person is different and what works for some may not work for another. But I will share what I have discovered!

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julynn, this link may offer some material that may be of interest. Thiamine (vitamin B1) plays an major role in the brain, vagus nerve and gut and requires magnesium to become bioactive. Activated thiamine is needed to activate B6. The B vitamins work better together. The first link begins about it and SIBO. Anti thiamine factors diminish or destroy thiamine. The stuttersence link contains a comprehensive list. Likewise, magnesium can be lost due to pain, stress and others listed in the krispin link. Finally, boron offers interesting benefits one of which is magnesium preservation. The last link contains more about boron. Always consult your health care professional before using any supplement.
https://www.eonutrition.co.uk/post/when-sibo-ibs-constipation-are-just-unrecognized-thiamine-deficiency
https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo
http://stuttersense.blogspot.com/2014/08/these-factors-reduce-your-thiamine.html
https://www.krispin.com/magnes.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712861/

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@julynn

I am new to this forum but have been finding some of the comments very helpful and interesting. I had a tumor by my appendix and near the cecum so had a surgery to remove it and of course, they had to remove the ileocecal valve. But it was not until starting in 2020 when I started getting symptoms that affected my quality of life – terrible grumbling noises in my intestines, chronic diarrhea, nauseous, and just feeling lousy. After my research and a great GI doctor we came up with the diagnosis of SIBO. Now I must say that I live in a country where testing cannot be done for SIBO so my Dr decided to just give me the treatment for it and see if it worked. Well, like many of you, I took Rifaximin plus several other antibiotics and each time, they worked for a while but then all symptoms returned, sometimes in a few day, a couple of weeks and one time after a month. But as you can see, without that valve in our bodies, this will be a permanent situation.

Well I got tired of that treatment so decided to do more research to go the natural route, which I am now on. I figure, if I need treatment all of the time, I might just as well go this route since the side effects will not be so harmful to my body as antibiotics. I started 3 weeks ago with Berberine Complex, Oil of Oregano and Betaine HCL. I also take Saccharomyces Boulardii. I have greatly improved, but am I totally symptom free? Not exactly, but much better. I understand from my research though that I cannot stay on Oil of Oregano permanently, so am going to try other natural supplements to switch them around. So it seems as this is going to be a trial and error journey and an expensive one at that!! My GI Dr says that this is the most expensive ailment a person can have and believe him! Well, this is just the start but as I progress along in my journey I will post my updates on what is not or is working for me. But as I can see each person is different and what works for some may not work for another. But I will share what I have discovered!

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Thank you so much for your time and help! So, just the GI dr and your research, correct? I may just try to do this all myself! I am encouraged by many posts here, finding I take many of the things listed. Encourage to get some testing done to check certain levels of things… again, thank you!

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@tiss

Can you alternate between xifaxan and oil of oregano? Your dr got it right– it's a financial hardship having this ailment and trying to keep it in check.

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That sounds like a good idea BUT the last time I used Rifaximin it did absolutely nothing for me, so I've kind of shelfed that antibiotic! But thanks for your thoughts on this. I am now taking Biocidin with GI Detox but something is not going with me on that because I've gotten worse in the diarrhea department! Will keep posting with my progresses or failures!

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@sbr270

After suffering for YEARS with chronic diarrhea from a colon resection 50+ years ago that left with no ileocecal valve and only 9 inches of colon ( and trying everything under the sun including Xifaxan that only worked for a few weeks) I was given Welchol. It is given for malabsorption, which I knew I had and I also had SIBO. It is a cholesterol medicine that has a side effect of causing constipation. I started with 2 pills a day and got relief immediately. I now take 4 pills a day and am a new person. It was first given to me by my internist and then when I switched gastros, he asked why my last gastro had not given it to me. Duh. This is a game changer. I get the generic which is fairly cheap. I hope this helps you.

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Interesting treatment I must say! Can I ask you if taking Welchol has affected your Cholestoral numbers at all? Also, what are the side effects of this medication in long term use?

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Xaxaflaxin and fledgl regimen for about a week gives relief
Some GI drs can get samples for those without insurance

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@julynn

Interesting treatment I must say! Can I ask you if taking Welchol has affected your Cholestoral numbers at all? Also, what are the side effects of this medication in long term use?

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No side affects at all! No major change in cholesterol numbers. Through trial and error, I figured out it is best taken about a half hour after a meal, rather than morning and evening as originally prescribed.

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@sbr270

No side affects at all! No major change in cholesterol numbers. Through trial and error, I figured out it is best taken about a half hour after a meal, rather than morning and evening as originally prescribed.

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Thanks for responding! I spoke to my GI Dr about Cholestyramine which is the same as Welchol but in powder form and he says he will prescribe it for me after my steroid treatment which I needed to start because my intestines got so inflamed. So I hope it helps me as well as it helps you!

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@julynn

Thanks for responding! I spoke to my GI Dr about Cholestyramine which is the same as Welchol but in powder form and he says he will prescribe it for me after my steroid treatment which I needed to start because my intestines got so inflamed. So I hope it helps me as well as it helps you!

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So glad to have found you guys, I have been on the same painful journey as most of you, and will post a lengthier message later on, but first wanted to comment on the bile acid sequestrants (welchol, colestipol, cholestyramine):

First, they need to be taken with food (right before, during, or after a meal), if you take them on an empty stomach you will get unbelievably painful issues. Also, if you find that you are getting issues regardless, it may be that you are not eating enough fat with a meal.

Second, you probably should not take them if you are prone to constipation. As a doctor once told me, these drugs will stuff up a goose. These treat bile-acid malabsorption diarrhea, which is related to SIBO (I will elaborate later).

Third, you should really consider asking your doctor for welchol or colestipol and not cholestyramine. Unless they changed it, welchol and colestipol both come in a convenient pill, but cholestyramine comes in this disgusting powder which does not mix well at all. If it comes in a pill, fine go for it, but I, and countless others, found the powder to be so inconvenient that it was effectively useless. Maybe the one benefit of the powder is that it is easier to dose, for example, do 1/2 or 1/4 of the pouch at a meal, but most of us need 2-4 pills (1.5 to 4g) of the acid sequestrants anyways.

What is the connection between SIBO and bile acid malabsorption? A GI told me that bacteria will digest and ferment extra bile acids, leading to even more symptoms and issues. So getting them out of your system via the sequestrants help to minimize the symptoms, even though the underlying SIBO is still not being addressed. Still, a game changer. Good luck all, again I have a longer post forthcoming with questions and ideas for all of you.

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@gboi

So glad to have found you guys, I have been on the same painful journey as most of you, and will post a lengthier message later on, but first wanted to comment on the bile acid sequestrants (welchol, colestipol, cholestyramine):

First, they need to be taken with food (right before, during, or after a meal), if you take them on an empty stomach you will get unbelievably painful issues. Also, if you find that you are getting issues regardless, it may be that you are not eating enough fat with a meal.

Second, you probably should not take them if you are prone to constipation. As a doctor once told me, these drugs will stuff up a goose. These treat bile-acid malabsorption diarrhea, which is related to SIBO (I will elaborate later).

Third, you should really consider asking your doctor for welchol or colestipol and not cholestyramine. Unless they changed it, welchol and colestipol both come in a convenient pill, but cholestyramine comes in this disgusting powder which does not mix well at all. If it comes in a pill, fine go for it, but I, and countless others, found the powder to be so inconvenient that it was effectively useless. Maybe the one benefit of the powder is that it is easier to dose, for example, do 1/2 or 1/4 of the pouch at a meal, but most of us need 2-4 pills (1.5 to 4g) of the acid sequestrants anyways.

What is the connection between SIBO and bile acid malabsorption? A GI told me that bacteria will digest and ferment extra bile acids, leading to even more symptoms and issues. So getting them out of your system via the sequestrants help to minimize the symptoms, even though the underlying SIBO is still not being addressed. Still, a game changer. Good luck all, again I have a longer post forthcoming with questions and ideas for all of you.

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SIBO was addressed and I’m still very gasy. On cholestipol attacks have stopped. Appreciate the tip with food. Every test is negative except borderline Inflammation and borderline SIBO. I even had a full ObGyn work up and internal sonogram. I’m exhausted hate eating and the bathroom. If everything is negative what’s wrong with me!?

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I wanted to give my story in the off-chance that it could be helpful to someone (or if someone has advice for me even!). Surprisingly, unlike most of you it seems, I had my ICV removed due to Crohn's Disease inflammation in the terminal ileum and cecum. Despite no apparent CD after that, I have had nonstop issues since the surgery (8 years ago). A new GI suggested I try a round of Rifaximin since my symptoms lined up with SIBO. For ~10 weeks I felt ON TOP OF THE WORLD, I could literally eat anything and had boundless energy. But then it came back. Rifaximin a second time … but this time the benefit was only ~6 weeks. A third time. Even shorter benefit. A forth course, no benefit anymore. Sad times.

As doctor "logic" goes, since Rifaximin wasn't helping anymore, it "couldn't be" SIBO anymore, so colonoscopy time. Lo and behold, they discovered that the connection between my ileum and cecum was done in such a way that I had about 8 inches of unused colon just flopping around (the two tubes were not joined to be "flush" way, rather they sealed the colon and put the connection nearly 8 inches away because surgeon reasons (the guy retired, nothing in their notes explained the decision, it will forever be a mystery. Lesson learned: if you're going to get a surgery done, ask you surgeon who THEY would have operate on them, and go to him or her).

After this "discovery", I consulted with all the big-wigs in the Crohns/GI world including Stanford, UChicago, and Cleveland Clinic, and they all seemed to think that this unused "blind loop" colon was probably harboring bacteria which would flow upstream into my small bowel, making it extremely difficult to eradicate SIBO since there was a constant replenishment of the starting culture. So off to yet another surgey … this was last year.

I forgot to mention that the SIBO diarrhea itself was not the worst part of this issue. What was absolutely DESTROYING my quality of life was that I was actually getting terrible insomnia due to GI "distress". Not pain, not really "bloating", not cramping (thankfully), just every single ****ing night at 3 to 5am my gut would kick into overdrive, and I would not be able to go back to bed until I past a (usually terrible) bowel movement, which usually took 2 hours. And of course the insomnia took over my life just at the start of the pandemic lockdowns so every doctor was telling me it was ALL PSYCHOLOGICAL, ALL IN MY HEAD, JUST LMAO FIND A WAY TO DE-STRESS MY DUDE. I think what may be happening is that my MMC is kicking into overdrive to try to clean the intestines (unlike some of you who seem to suffer from a lack of MMC), to an extent that I could not sleep through it. No doctor has provided a good explanation, alas.

After the surgery, I stopped having the worst of the "diarrhea" (actually more of a sludgey mess TMI sorry), but the insomnia and bloating was still there. So we tried Rifaximin … nothing. But then we cycled through a bunch of conventional antibiotics: cipro, doxycline, flagyl. Each time I achieved remission, but after 10-14 days, symptoms came right back. I told my doctor I was done cycling antibiotics so this time they gave me neomycin (500mg 2x day 30 days) (similar to magical rifaximin, neomycin is not taken up into the body so it is only active in the intestines. Unlike rifaximin, neomycin is pretty active in the colon which gives its own side-effects, and the small amount that is absorbed is very toxic to your kidneys and your hearing, so I cannot be on this my whole life, I believe). I have 5 days left in this present course, but I feel fantastic again. Complete remission. Killing each day. I have no clue what's going to happen once I come off, but at least this really does seem to suggest that the issue is SIBO and I need to figure out a way to keep the critters away.

Apologies for the diatribe. Some key points that hopefully are helpful to fellow suffers:
– If you haven't had a colonoscopy in a while, consider having one and tell them to really examine your anatomy and make sure the anastamosis is optimal and that there are no irregularities or issues. My MRIs (I've had several) always showed some kind of "thickening" near the anastamosis which they "assumed" was inflammation or scar tissue, but it actually turned out to be a length of colon just chilling. Yikes.
– If you respond to antibiotics, it is probably SIBO. If you stopped responding to Rifaximin (or never did), try getting on another one like neomycin or cipro (if appropriate for your situation, of course), and see if it moves the needle at all. If you do not feel better or at least "different" after blasting your microbiome, seems unlikely that it's SIBO (but maybe could be SIFO or some other critters, who knows).

Anyway, again hope this helps someone or at least starts giving them ideas. By no means have I "solved" my issues but I think I am making progress, and I hope that working together we can make progress for everyone. Peace.

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@gboi

So glad to have found you guys, I have been on the same painful journey as most of you, and will post a lengthier message later on, but first wanted to comment on the bile acid sequestrants (welchol, colestipol, cholestyramine):

First, they need to be taken with food (right before, during, or after a meal), if you take them on an empty stomach you will get unbelievably painful issues. Also, if you find that you are getting issues regardless, it may be that you are not eating enough fat with a meal.

Second, you probably should not take them if you are prone to constipation. As a doctor once told me, these drugs will stuff up a goose. These treat bile-acid malabsorption diarrhea, which is related to SIBO (I will elaborate later).

Third, you should really consider asking your doctor for welchol or colestipol and not cholestyramine. Unless they changed it, welchol and colestipol both come in a convenient pill, but cholestyramine comes in this disgusting powder which does not mix well at all. If it comes in a pill, fine go for it, but I, and countless others, found the powder to be so inconvenient that it was effectively useless. Maybe the one benefit of the powder is that it is easier to dose, for example, do 1/2 or 1/4 of the pouch at a meal, but most of us need 2-4 pills (1.5 to 4g) of the acid sequestrants anyways.

What is the connection between SIBO and bile acid malabsorption? A GI told me that bacteria will digest and ferment extra bile acids, leading to even more symptoms and issues. So getting them out of your system via the sequestrants help to minimize the symptoms, even though the underlying SIBO is still not being addressed. Still, a game changer. Good luck all, again I have a longer post forthcoming with questions and ideas for all of you.

Jump to this post

Thanks for your very informative response – greatly appreciated. I believe that where I live I can only get the powder form, cholestyramine not the pills. But I will check again. I don’t live in the US. Diarrhea is my main problem so constipation is not an issue i have already.
Very interesting point you mentioned about bacteria feeding on the bile acid. Any other information you have to share I readily look forward to! Thanks!

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I just read your second post which was quite something on the history of your situation! Much like you, Rifaximin did help temporarily twice but the third time it did nothing. The next antibiotic I took was a combo of Cipro and Flagyl (I believe). It worked for about a month. But now I’ve decided to go on natural antibiotics and Oil of Oregano does not irradicate the problem but seems to manage it somewhat. So I think I will use that off and on for now. So was thinking of combining that with the Cholestyramine after I finish the steroids. But I run everything by my GI Dr. first. Will continue to keep my posts coming on progress or failures. We truly learn from each other in this dire situation that we are in!

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