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Permanent SIBO due to removal of ileocecal valve

Digestive Health | Last Active: Mar 5 12:42pm | Replies (188)

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@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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Replies to "This is an old post but I found it from searching illeocecal valve and SIBO on..."

Thanks for this info. I assume the Xifaxan does not have lots of side effects. And long term use ok?

Hello,
I am new to this group. Back in Oct. 2015, I had an emergency surgery due to a volvulus, which resulted in the removal of the ileocecal valve, appendix, small amount of small intestine removed and 2 ft. of the large intestine. I have been on a healing journey with many ups and downs. It is good to know that I am not alone. I have tried elimination diets, but have found that most food affects me the same . I take dicyclomine liquid 3 times a day, with some relief. I realize SIBO is an issue for us, however, I was diagnosed as having borderline SIBO 2 yrs. ago. I was wondering if you had any suggestions for using a different medicine that could help with the cramping and pain. I wish you well, and if you have any good advise , I would welcome it. Thank you! Beth

I had the same surgery they took out ileocecal valve appendix gallblatter as well as piece of small and large intestine. Please let me know if you find out any fix. Thanks. Steve

Thank you so much for sharing your history. I also had the same surgery for the same reason in 2015. My doctors never believed the significance of how it changed my life. And continued to get worse. Diarrhea, occuring unannounced, in my pants, when i was out. I stopped going out, became weak, with chronic fatigue, muscle tenderness, weakness, brain fog and rashes on my finger. Finally, I have a gastroenterologist who believes in SIBO. I have finished my third course of antibiotics. Diarrhea returns about 2 1'2 weeks after I complete them. I will ask about Xifaxan when I see him next week. I have regained some weight finally, and I am going for long walks. It is sad though. That symptoms return.

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?

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.

How were you able to get your insurance company to approve Xifaxan every day? My insurance company fought and fought me so I gave up. They won’t let me be on it longer than two weeks in a 3 month time span. I’m in the same situation as you - I had my valve removed so there is nothing to stop the bacteria from coming into my SI. Desperate for info.