1. < Digestive Health

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 Support Group.

julynn | @julynn | Apr 21, 2022

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!

REPLY
5 replies
rocknrobbn | @rocknrobbn | Apr 24, 2022
In reply to @julynn "I am new to this forum but have been finding some of the comments very helpful..." + (show)
@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!

Jump to this post

Thank you for sharing. I appreciate everything I learn on this forum.

REPLY
Amanda Burnett | @amandaa | Apr 25, 2022
In reply to @julynn "I am new to this forum but have been finding some of the comments very helpful..." + (show)
@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!

Jump to this post

Hi @julynn and welcome to Mayo Clinic Connect. I have heard of the positive effects of Oregano oil. They say it kills bacteria by breaking their cell membrane. Research tells us that oregano oil works to reduce different kinds of unhelpful bacteria, but leaves the friendlier Lactobacillus and Bifidobacterium alone.
Since you started this regimen, are you having your doctor follow the progress?

REPLY
1 reply
sbr270 | @sbr270 | Apr 26, 2022

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.

REPLY
2 replies
jollygreen17 | @jollygreen17 | Apr 27, 2022
In reply to @sbr270 "After suffering for YEARS with chronic diarrhea from a colon resection 50+ years ago that left..." + (show)
@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.

Jump to this post

Thanks!! I had the same procedure in 2010 and have been dealing with the same issues as well as magnesium and potassium deficiencies. I see a new GI doc next month and will ask about Welchol.

REPLY
julynn | @julynn | Apr 29, 2022
In reply to @amandaa "Hi @julynn and welcome to Mayo Clinic Connect. I have heard of the positive effects of..." + (show)
@amandaa

Hi @julynn and welcome to Mayo Clinic Connect. I have heard of the positive effects of Oregano oil. They say it kills bacteria by breaking their cell membrane. Research tells us that oregano oil works to reduce different kinds of unhelpful bacteria, but leaves the friendlier Lactobacillus and Bifidobacterium alone.
Since you started this regimen, are you having your doctor follow the progress?

Jump to this post

Yes I am informing him of my condition each week. I cannot say I am completely better but rather I'm a "a work in progress!" While I take a break from Oil of Oregano I have decided to try a couple of different Natural supplements to see which might work better for me. I hope to try Neem Plus and Biocidin. So we shall see how it goes. I will keep you posted.

REPLY
maryeamon | @maryeamon | May 24, 2022

Hello, I too have had a right hemicolectomy. Mine was in 1998. I have tried to find any post that indicates where someone has found the "best" combo of practitioners to work with to deal w/the life long SIBO, etc. So far, I have had ND's and ND's that are also Functional Med Drs, as well as GI Drs that are also Fun Med say they will take my case on...but have no experience with this. I tried one locally but felt he was taking me on a long road that was way too costly.
In addition, he had supplements on his shelves that have ingredients that exacerbate the issues.

Any referrals would be great.

Thank you!

REPLY
tiss | @tiss | May 25, 2022
In reply to @julynn "I am new to this forum but have been finding some of the comments very helpful..." + (show)
@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!

Jump to this post

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.

REPLY
1 reply
onamission | @onamission | May 25, 2022
In reply to @julynn "I am new to this forum but have been finding some of the comments very helpful..." + (show)
@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!

Jump to this post

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/

REPLY
maryeamon | @maryeamon | May 25, 2022
In reply to @julynn "I am new to this forum but have been finding some of the comments very helpful..." + (show)
@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!

Jump to this post

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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