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.

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sibo1234 | @sibo1234 | Jan 17 11:41pm
In reply to @tiss "This is an old post but I found it from searching illeocecal valve and SIBO on..." + (show)
@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.

Jump to this post

I know this is an old post but I found it with searching. I am hoping this person will respond.

I am currently in the hospital with this. My sibo gets so severe when I stop taking xifaxan. I get such overgrowth from e.coli that I have severe diarreha which leads to dehydration. That requires iv fluids.

I have discovered xifaxan completely fixes this but it has been a hit and miss operation finding the correct dose.

3x daily 550mg every 8 hours works. But it is a very expensive medication.

I found taking 1/2 of a 550mg 2x daily sort of works. But I still have some diarrhea. Increasing that to 3x daily does better.

I have crohns. I had my ic valve removed years ago. Sibo is my worst problem which I only discovered was the problem a few years ago.

I have tried Flagyl which also works but it does not work near as well as xifaxan. Flagyl is cheap.

Anyways. It is very hard to find information on this. I would greatly appreciate knowing how much xifaxan you are taking?

REPLY
2 replies
jlstjohn | @jlstjohn | Jan 18 6:01am
In reply to @tiss "This is an old post but I found it from searching illeocecal valve and SIBO on..." + (show)
@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.

Jump to this post

My story is almost identical to your except I had 5 feet of small intestjne removed in 2021. What is your the daily dose they have you on for Xifaxan? I have been treated 3 times for SIBO since this all started, it comes about every 5 to 6 months. Otherwise I manage okay with dietary suggestions from a specialized GI RD.

REPLY
tiss | @tiss | Jan 18 10:42am
In reply to @sibo1234 "I know this is an old post but I found it with searching. I am hoping..." + (show)
@sibo1234

I know this is an old post but I found it with searching. I am hoping this person will respond.

I am currently in the hospital with this. My sibo gets so severe when I stop taking xifaxan. I get such overgrowth from e.coli that I have severe diarreha which leads to dehydration. That requires iv fluids.

I have discovered xifaxan completely fixes this but it has been a hit and miss operation finding the correct dose.

3x daily 550mg every 8 hours works. But it is a very expensive medication.

I found taking 1/2 of a 550mg 2x daily sort of works. But I still have some diarrhea. Increasing that to 3x daily does better.

I have crohns. I had my ic valve removed years ago. Sibo is my worst problem which I only discovered was the problem a few years ago.

I have tried Flagyl which also works but it does not work near as well as xifaxan. Flagyl is cheap.

Anyways. It is very hard to find information on this. I would greatly appreciate knowing how much xifaxan you are taking?

Jump to this post

Hello and I'm sorry you are having this problem. It really affects the quality of life and I'm grateful for Xifaxan but you are right, it is mega expensive. I am taking 550mg 2x daily. During the start of Covid I decided to see how I do on 2 pills daily instead of 3 due to cost. I do "ok" but better on 3 pills a day but I stay with 2 pills. I am on Medicare and we are retired. My portion of the cost takes 3/4 of my social security check for a several months until I meet that crazy high deductible. It is a tier 5 drug. Pretty untouchable for most people and there's no patient assistance unless you have a total 30,000 or less in assets. We aren't wealthy but we don't fit in that poverty category either. I tried flagyl too but it makes me very sick and it can't be taken long term. This is sad to say but I want to live long enough to see Xifaxan go from brand to generic! It's criminal that a drug should cost so much.

REPLY
kickingswan | @kickingswan | Jan 19 10:35am

I have no idea if this could help but natural antimicrobials might be worth a try…such as oil of oregano, allicin, candibatin AR or BR depending on your symptoms, bloat, dirreaha etc A good naturopathic Dr may be able to help….

REPLY
naomicanada | @naomicanada | Jan 19 10:58am
In reply to @sibo1234 "I know this is an old post but I found it with searching. I am hoping..." + (show)
@sibo1234

I know this is an old post but I found it with searching. I am hoping this person will respond.

I am currently in the hospital with this. My sibo gets so severe when I stop taking xifaxan. I get such overgrowth from e.coli that I have severe diarreha which leads to dehydration. That requires iv fluids.

I have discovered xifaxan completely fixes this but it has been a hit and miss operation finding the correct dose.

3x daily 550mg every 8 hours works. But it is a very expensive medication.

I found taking 1/2 of a 550mg 2x daily sort of works. But I still have some diarrhea. Increasing that to 3x daily does better.

I have crohns. I had my ic valve removed years ago. Sibo is my worst problem which I only discovered was the problem a few years ago.

I have tried Flagyl which also works but it does not work near as well as xifaxan. Flagyl is cheap.

Anyways. It is very hard to find information on this. I would greatly appreciate knowing how much xifaxan you are taking?

Jump to this post

From what I understand SIBO is a bacterial overgrowth … did you pass any test to make sure it’s SIBO.
Google says the faster way to treat it is antibiotics ?

REPLY
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