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.

No, I have not heard of it. I will check it out. Thank you!

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Can’t afford Xifaxan either, but I’m considering getting it from a certified Canadian pharmacy. I just started on Motegrity and it helps, but so expensive. $200/ month with my Medicare. I will definitely try to get it from a Canadian pharmacy.
PeptoBismol helps me a lot to control SIBO.

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@astaingegerdm

Can’t afford Xifaxan either, but I’m considering getting it from a certified Canadian pharmacy. I just started on Motegrity and it helps, but so expensive. $200/ month with my Medicare. I will definitely try to get it from a Canadian pharmacy.
PeptoBismol helps me a lot to control SIBO.

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Be careful ordering from Canada. I ordered Lexapro after doing all my homework on finding a legitimate website and it turns out it wasn't the real stuff. Hard lesson learned.

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@guthealth

For me the diet has been key after antibiotics. No complex carbs that ferment and stay in the gut for the bad bacteria to feed on. I eat protein, fruits and vegetables. Because I lost so much weight, my nutritionist has me taking supplemental enteral shakes (enzymes)which my body absorbs very quickly before the bad bacteria can get a hold of it. It is a very slow healing process. I think diet is a key component of maintaining remission if we can call it that.

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Hi, I am just finding all of this info. Did you have a surgery too or do you only have SIBO (at the time of your post)? I'm hopeful I am finally on the right track in my research

Thanks!

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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

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

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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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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?

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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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@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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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.

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@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?

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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.

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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!

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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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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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