Permanent SIBO due to removal of ileocecal valve

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.

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.

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....

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 ?

Antibiotics for SIBO are treating the symptoms. Antibiotics kill good and bad bacteria. Once you go off the antibiotics, the symptoms return - I was on Rifaximin a few years ago and once I went off, all my symptoms returned. And I wasn’t about to stay on it long term or forever. We all need the good. When taking antibiotics from my understanding, you also need to take prebiotics and probiotics as well as make dietary changes to reduce the amount of sugar in your food choices and build up the good bacteria that helps with digestion.
Best of luck to you all. This journey takes time to resolve.

Yes, I was tested and yes, you’re correct, SIBO is bacterial overgrowth in the small intestine. The bacteria comes from the lower digestive tract to feed on the food in the small intestine that’s not being digested. So, one you need to improve digestion and gut motility. That gets the bacteria back down to the lower intestine where it belongs. You can take antibiotics but antibiotics don’t solve the digestion issue. Once off the antibiotics, symptoms return - that’s what happened to me. I too Google many things. But Google cannot replace a good doctor.

If you are interested in using diet instead of antibiotics I will share my routine with you. Some people find that eventually their bacteria become resistant to Xifaxan. I am not familiar with the diet requirements when you live with Chrons disease but i have found that since my ileocecal valve was removed during a complicated appendectomy that I have had to alter my diet to prevent SIBO relapse. For me that means I eat no flour products, only a low FODMAP salad, meats, nuts, and very limited fruit. I take ginger after meals to help with gut motility. I am fructose, gluten, and lactose intolerant so have a very limited diet. I have found using the Monash University FODMAP app a great help in keeping my sugar load down as well as Norm Robillard's Fast Trac Diet app to limit my exposure to carbs that gut bacteria feed on. The lower the glycemic index a particular food is the longer it takes to digest and the more time the bacteria have to eat and multiply. Going for a walk after eating helps with gut motility too. It has taken over 8 yrs to figure out what works for me. I found a probiotic with Bifdobacterium has helped with loose stool, it did not help for the first couple of years after my operation but works great now. There is a list of additives that can also cause digestive upset for people with sensitive guts. If you are interested I can find it and send it on to you. Hope some of my history helps.

Any one tried Acacia fiber to help with digestion? I am wondering if it will feed the bad bacteria or if it is "safe". Hate to try it and suffer another bout of SIBO

Here is a really great, informative and helpful book, Super Gut, written by Dr. William Davis. You’ll learn about SIBO and how to self treat if you are inclined. He explains his methods and tells you why this will work. It’s worth a look. He includes recipes and a 4 week plan. You can purchase on Amazon.