SIBO forever due to ileocecal valve removal?

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.

Sorry about what has happened to you. I went through the same thing when I had a small bowel resection with my ileocecal valve removed 22 years ago when I was 29. I tried everything, including pepto, Imodium, dietary changes, you name it and I’ve tried it! Constant pain, bloating and diarrhea, missing work, not being able to leave the house . I found a GI doctor about a year afterwards who prescribed me CHOLESTYRAMINE. It comes in little 4 gram pouches and I take it 3 -4 times daily, one dose before each meal mixed with about 4 ounces of water . It was life changing!! I hope it works for you too! Let me know how you make out!

It is good that you are reaching out to the Mayo Clinic connect group as from experience we probably have more suggestions for you than most Doctor's. My ileocecal valve was removed along with my cecum, appendix, and portions of my small and large intestine. I was prescribed Cholestryamine for the resulting Bile Acid diarrhea. I purchased compounded Cholestryamine on-line from a lab in California as I did not want the dyes and additives the regular stuff contains. Without the additives it smells like fish and coats your mouth like sand. I packed it into a gel cap to get around having to drink the stuff. It really helps but works a little too well. At 1/8 tsp I got severely constipated so found an alternative.
Calcium carbonate is constipating for me, so as my daily calcium supplement it works great. You can make it with eggshells or purchase it on-line from Swanson Vitamins.
Please avoid using Citracel as the methylcellulose fiber in it damages the lining of the small intestine which will lead to leaky gut and more food sensitivities.
There is a great FODMAP app that will help you determine what foods are high in the different sugars and gives you the "safe" amounts to eat.
https://www.monashfodmap.com
Everyone is unique in what works for them. I have been on this journey for 10 years and am finally healing. Using Citracel set me back a bit. My digestion improved remarkably since adding potatoes, lentils, and shell beans like garbanzo's. In the beginning I stayed within the FODMAP portion size recommendations and have slowly been able to increase portion size for some items.
Beans are a great source of fiber and nutrients, if they give you gas Wal-Mart sells a generic Beano that works well. Regular brand name beano has mannitol in it and that on its own can cause gas so is best avoided. I seem to be sensitive to additives, maybe from the Citracel damaging the mucosal lining of my small intestine. I avoid all of the fake sugars that end in "ol".
From trial and error you will figure out how many carbs you can tolerate a day. You have to use caution with the FODMAP diet as you can eat the recommended amount for a specific food but go over your "safe" carb level by eating too many portions of the specific carbs that bother you. (Tomatoes, melons, apples all have fructose so eating all of them at one meal in large enough portions may cause gas).
Good luck and be patient!

Did things gradually get better with time? Did cholestyramine improve your symptoms or just back you up? I did colestipol and it only made me constipated but didn’t improve the SIBO symptoms.

Do you feel like time helped too? I’ve noticed time has helped but I’m still struggling. I have tried what seems like every medication and diet with no luck. I’m wondering if I have an allergy or something? Flagyl is the only thing that has helped but I can’t take it forever.

Cholestyramine only made me constipated and did not effect other symptoms at all. My thought on loose stool is it means you are not absorbing all of the nutrition from your food and long term it is hard on the large intestine since it is so acidic.

Yes, I think time has helped, my thought is healing in the gut is not quick due to all of the food that passes through it daily. I have read that collagen is healing so I have added jello to my diet, I make it from gelatin powder, lemon juice, and monk's fruit (as a sweetener). I sprinkle 1/4 cup of frozen blueberries (FODMAP safe portion) over my 1 cup serving of jello and it is a welcome treat.

Have you looked at Norm Robillard's fast track diet?
https://www.fasttractdiet.com
https://digestivehealthinstitute.org/fast-tract-diet/
He is a microbiologist who had acid reflux, went on a low carb diet to loose weight, and his symptoms disappeared. He has discovered that high fiber foods digest too slowly and allow bacteria to thrive and multiply. While the bacteria are busy digesting the fiber they cause gas. He has written a couple of books that explain the diet.
Some foods that are FODMAP safe are too high in fiber/carbs for my gut. An example is Quinoa whole grain, on the FODMAP app 1 cup of cooked Quinoa is safe, on the Fast Trac App 1 cup of cooked Quinoa has a fermentation potential (FP) of 56. I think I don't tolerate over 50 FP in a whole day, so quinoa is out. I have also found that I might be able to eat a small portion of a high fiber food, but not every day.
So I guess I recommend you get the Fast Track Diet book and then the app if you are willing to try it. You will need to keep a food diary to keep track of your portions and FP points. I had to combine the Fast Track Diet with the FODMAP diet as I am sensitive to Fructose and Fructans.
Any time you have gut surgery it increases your risk of developing food sensitivities.
Our library had a copy of his book:
https://digestivehealthinstitute.org/shop/
One thing that really helped my gut was when I was able to add potatoes, shell beans, and a probiotic. I eat a lot of salad and add in veggies/beans in portions that I digest well. It seems like I am tolerating more fiber than I use to but do not expect to ever get back to pre-surgery efficiency.
It took years to find a probiotic that helped me. I really like SFI Ther-biotic Synbiotic, it is a FODMAP safe probiotic. I purchased a different brand that had FOS fiber and it gave me gas. So watch out for additives in your supplements!
I also like Healthy Origins Natural Probiotic, 30 billion CFUs.
I have attached a list of additives that have been found to cause some people digestive upset. The list is from Dr. Alison Siebecker, an expert in the SIBO field. Who knows, you could be taking a supplement that is causing problems for you. I find magnesium oxide causes a lot of gas and loose stool so you might want to watch out for it too!
Put on your detective hat and get going! The digestive process is so complicated it sometimes takes a bit of work to find the key to good digestion. Good luck and hang in there!!