SIBO forever due to ileocecal valve removal?

Posted by blbanner @blbanner, Feb 22 10:37pm

I’m at a loss and could use some input from anyone familiar with my story. I had my ileocecal valve (ICV) removed about 18 months ago. Since then, I have had chronic bloating, inflammation, bloating, gas, nausea, and diarrhea. Doctors ruled out Crohn’s initially, but my igg results came back positive for it so I’m getting an MRI to look at my small intestine. However, doctors thought it could be SIBO. I took Xifaxan on and off for months and I thought it was helping, until recently, it didn’t do a thing for me. I tried Flagyl but that doesn’t seem to do anything either. I’m on Diflucon for candida and that doesn’t seem to help either. I’m at a loss! If it’s not Crohn’s, SIBO, or Candida, what is it? I went GF and DF for three months a handful of months back and it didn’t do much for me either. I haven’t gained more than 5 pounds and I have outgrown two pant sizes within the year! My quality of life is shot these days!

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I had a right hemicolectomy in 2007 which removed my ileocecal valve. Over time I became increasingly symptomatic in the same ways as you. I tried lots of things unsuccessfully, until I went to a dietitian who ordered stool testing and food sensitivity testing. The tests showed SIBO, primarily methane but also hydrogen, and no food sensitivities at all. She recommended a number of supplements based on reducing the overgrowth of unwanted bacteria and others to increase the population of bacteria that belongs in the small intestine. I’m also taking a PPI and sucralfate for gastritis and GERD and follow a modified FODMAP diet and low acid diet. As a result of these interventions, I feel much better, and know this will be lifelong due to ileocecal valve removal. I’ve been working with the dietitian since late October so it’s been a gradual but significant 4 months of improvement. I’m meeting with her Monday to plan a supplement maintenance regimen now that I’m back to somewhat balanced. I can’t tell you how helpful the FODMAP diet was to figure out what was feeding the “bad” bacteria overgrowth. For me it’s fructans and GOS. I tried the diet years ago but did the introduction too quickly but this time I was rigorous and got a lot out of it. I like my MDs, but I have had way more help from working with the dietitian. I’m healthy otherwise, 71 y.o., slender woman. The gastritis and GERD are conditions separate from the SIBO, and I also have a hiatal hernia. Again, these conditions are not related to the SIBO so I hope and think you will get a lot of help with your SIBO from a good dietitian. A lot of them specialize in the gut and advertise themselves as such. Good luck!!


I am sorry to hear about your issues. I suffer from SIBO due to IC valve removal as well, here is what I've learned through-out the years, hopefully some of it can help.

First, even though it seems tough, please remember that this is a very "treatable" condition because it is largely "mechanical". The model is straightforward - you have bacteria in the wrong place, and you feel unwell whenever they get to feast. So let us talk about these two things separately.

Bacteria are in the wrong place - you said that xifaxin helped at first, but then you seemed to lose a response, potentially due to antibiotic resistance forming. This is unfortunately common. I also had doctors cycle me through antibiotics, sometimes seemingly chosen at random. You need to consider taking oral neomycin (500mg 2x/day for 28 days I think was the dose that I took). Like rifaximin, it is largely gut-specific, so it allows you to really hammer away at the bacteria and give yourself a fighting chance if you have lost response to other compounds. Unfortunately, it has a risk for hearing loss and kidney damage, so it is not appropriate for everyone - please discuss the risk vs. reward with your doctor.

In addition, if/when you get a colonoscopy, please ask them to inspect your anastomosis carefully to ensure that it is flush and not a blind loop. Literally, right before they put you to sleep, tell the doctor those exact words: "please inspect the surgical connection to make sure it is flush and not a blind loop". I had a large blind loop (a dead-end that would harbor bacteria and basically push it back into my intestines) that was making my situation much worse. A surgery was required to fix it - if you are in this situation, better to find out as soon as possible.

Now, to talk about the bacteria feasting. As the above poster described, it can be confusing to figure out what you can tolerate to eat, but fortunately after some research, some patterns emerge. You can certainly find a dietician or holistic practioner to help, but you should also feel empowered to experiment on your own. Basically, you need to run a pretty strict exclusion diet for some time, and document how you react and feel. Please remember that a super strict diet is not forever, but by making sacrifices now, you can return to "normal" sooner.

Two important notes:

First, in my experience, if I eat something "bad" just once, it can take 4 days (96 hours!) for my system to get back to normal, so the exclusion of any foods should be at least this long. Going a full seven days is probably long enough, however, to judge whether something will work or not.

Second, you will probably "feel bad" during the exclusion diet, so at the very least make sure that you are eating >enough< food, especially food that you suspect you can tolerate, to maintain energy levels and mood. Again, this is not going to be the rest of your life, so make an effort to calculate your TDEE ballpark your calorie intake and make it easy on yourself.

Now let us talk about food specifically: as you probably know, the preferred food of most bacteria is usually carbohydrates. However, not all carbohydrates are the same, especially in terms of when the body absorbs them. Fortunately for us, unless it's really, really bad, the SIBO is largely at the end of the small intestine, so you want to eat food that is absorbed sooner rather than later.

As the above poster said, educate yourself on FODMAPs. It may be that you can tolerate some of these compounds once you get your situation figured out, but when starting out, it is likely that foods in this category will cause issues, but you may end up surprised. For example, I cannot really tolerate bananas (of any ripeness) or onions regardless of how I am feeling, but I usually have an apple with lunch and dinner and have no issues. After experimenting for yourself, hopefully you find foods you like that sit well with you.

Simple sugars have a bad rep, but actually can usually be well tolerated in SIBO-sufferers because they are absorbed so quickly (bad news for diabetics, of course!). First let us mention the caveat of fructose (the F in FODMAP) malabsorption: unfortunately, some people cannot tolerate this sugar, which comprises 50% of table sugar. Studies usually test with 25g for severe malabsorption and 50g for mild-to-moderate. Have a glass of apple juice on an empty stomach and see how you feel for the next 1-2 hours - if you don't have GI distress, you're probably fine, otherwise, well now you know what to avoid. As with most things, the "dose maketh the poison".

The other general class of carbohydrates to investigate is starches. In the West, the main forms you encounter are wheat/grains, potatoes, and rice. The recent fad seems to be to exclude these foods entirely for health and longevity, and there might be valid reasons for this, but of course a human has got to eat something! In my experience, the issue with potatoes and rice is that when you cook them and then cool them down to store in the fridge, the starches recrystallize in a way that they become "resistant" to digestion. There is even a "cold potato" diet built around this idea for morbidly obese people. Good news for people trying to decrease calories and feel full, very bad news for SIBO sufferers. If you have the luxury, I recommend eating these foods freshly cooked only. Wheat/pasta, for whatever chemical reason, seems to suffer much less from this phenomenon, and I have much better luck reheating this for meals. Again, I understand that wheat has become a boogeyman in health circles for a number of founded and unfounded reasons, but a person has to eat. Simply buy the best quality you can without additives and give it a shot.

"Gums" are additives added to a ton of foods to improve mouthfeel and shelf-life. Examples include guar, xanthan, and carob bean gum. Unfortunately, these polysaccharides pass get extensively fermented during digestion, and can cause SIBO bacteria to feast. I cannot over-exaggerate how much even a small amount can cause issues - when I was first getting sick, one brand of tortillas that had xanthum gum was causing me 10x the issues of another commercial brand that did not have them, which queued me in that something was wrong. Also unfortunate, however, is that there is no "standard" for any of these gums. Since they are complex molecules made by multiple biological processes and then processed in who knows how many ways, one company's xanthan gum may be different than another's. Best to avoid these entirely at the start, UNLESS you are taking antibiotics for SIBO, in which case consider eating them in small to moderate quantities to cause the bacteria to temporarily multiply and be hammered by the antibiotics.

Good luck.

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