SIBO due to ileocecal valve removal

4 years ago right colectomy: for Diverticular w/ acute inflammation.
Removed:
part of small intestine
consisting of the terminal ileum (due to Submucosal lipoma) cecum, appendix plus appx 10” of ascending colon and also 1 benign lymph
History of chronic & severe diverticulitis throughout entire life/colon including sigmoid colon, have a redundant colon with excessive coiling and very slow mobility Also have lipomas elsewhere .
Post surgery immediately suffer undiagnosed/untreated horrible bile acid diarrhea for a year - eventually prescribed Cholestyramine - which after long time use, eventually caused diarrhea & instead of controlling (never fully stopped any symptoms, at best better control) with this diagnosis i ate no dairy, no unhealthy fats or fried, low acidic, fermented foods, high fiber - often BRAT
- per GI “your body can correct BAM eventually” so I’ve stopped this med but still suffering with diarrhea (doesn’t seem to have bile), small soft (amounts) pencil this stools, incomplete & frequent- taking hours to fully evacuate. Bad Abdominal bloating, cramping, throbbing pain, spasms, gas and burping

Post surgery have I always also had SIBO? I don’t know and never had medical tests to confirm BAM and/or SIBO But GI just ordered. SIBO test - awaiting delivery. But after 3 days of herbal supplements for SIBO - I stopped. Either horrible “die off” symptoms that I can not possibly live or function with (still in bed today) or bad reaction ??
But if SIBO & desperately trying to be well I am now following a SIBO diet (which completely differs from BAM)
I eat extremely clean but welcome any advice & suggestion & help with that! Thank you
Great info about “gum” & carbs and precooked rice (eat often to control diarrhea) Also tecently told to avoid any wheat products with the words “Enriched & Fortified”
Really much your response, support and any advise or suggestions Sadly don’t feel I have the best GI doctor with the verycomplicated issues I have.

Once your ileocecal valve is removed bacteria from the large intestine can migrate back up into the small intestine and cause gas pains and bloating. Some fibers and carbohydrates feed bacteria to such a high degree that they will cause bloating. Which ones are the culprits is up to you to determine as everyone's gut microbiome is unique to the individual.
From the trauma of surgery you may also develop food sensitivities, especially to carbohydrates/sugars. If this sounds like you a low FODMAP diet may help combined with an elimination diet to determine where your sensitivities lie.
Monash University has a great FODMAP app that helps you determine portion size on foods.
https://www.monashfodmap.com/
You will probably have chronic SIBO if you do not take the time to discover your food sensitivities and determine portion sizes that don't cause digestive issues. Dr. Norm Robillard has developed a low carb diet app called the Fast Trac Diet that helps you determine the fermentation potential of many foods.
Foods that take longer to digest can sometimes allow too many bacteria to populate your intestines which then causes digestive upset or acid reflux. I use the FODMAP and Fast Trac Diet app to help me focus on a safe diet. The great thing about the Fast Track Diet is you can limit your carbs and get rid of SIBO without taking any supplements or antibiotics.
I am going to recommend you look at Dr. Norm Robillard and Dr Allison Siebecker for more information. They are the real deal and out to help people not just make a buck. Good luck and hang in there!
Dr Norm Robillard:
https://www.youtube.com/@DrNormGutHealth
Dr. Allison Siebecker is a great resource for information on treating SIBO.
https://www.siboinfo.com/
Supplements That May Aggravate SIBO (list from Allison Siebecker webpage):
https://www.siboinfo.com/sibo-supplements-to-avoid.html
Supplements to avoid handout link is provided on the webpage referenced but basically is the list provided below.
Individuals vary greatly in their reactions to these items. They may cause no problem or they may cause symptoms. The amount matters. Many find they may tolerate a small amount but not a larger amount. This tolerance threshold varies person to person, item to item and over time in the same person. Experimentation is necessary to find if, and how much, any of these items create symptoms.

Prebiotics
Inulin
FOS (fructoligosachharides)
GOS (galactoligosaccharides)
MOS (maltoligosaccharides)

Gums
Arabinogalactan (a common component of gums)
Acacia/Arabic
Beta glucan
Guar
Locust bean (carob)
Xanthan
Mastic

Starch
Maltodextrin (above 450mg is often problematic)
Tapioca starch
Potato starch
Arrowroot starch
Corn starch

Soluble fiber
Pectin (jam, yogurt)
Flax, Chia & Hemp seed
Psyllium
Bran
Beta glucan

Seaweeds
Alginate, Algal
Carrageenan
Agar agar

Sugar alcohols- anything that ends in “-ol”
Maltitol
Sorbitol
Mannitol
Xylitol
Erythritol (this is the best tolerated sugar alcohol)

Sweeteners
Agave
Lactose
Fructose
Sugar/ Sucrose
Sucralose
Note: dextrose is glucose and is not to be confused with maltodextrin which is starch

Supplements Themselves
D-Mannose (although a monosaccharide, it is poorly absorbed)
Chondroitin Sulfate, Glucosamine Sulfate and N Acetyl Glucosamine (mucopolysaccharides)
Glucomannan (Konjac root gum)
Mucilaginous Herbs- Aloe Vera, Licorice, Marshmallow, Slippery Elm
Mastic Gum

@allioops
Thank you for sharing more about your unique situation. So glad that other members of the community have stepped up and provided useful information and links. As I believe you have come to realize, you will largely have to be your own advocate and direct your own treatment plan (and lifestyle plan) to get through this.

Were I in your position, I would perform an aggressive elimination diet to figure out what foods I could best tolerate. The rough guidelines are that foods naturally low in carbs - meat, hard cheeses, healthy fats, are most likely to be safe, while carbs are more likely to cause issues, but of course your own personal response will likely vary. Hopefully you can find some degree of control over your condition.

If you decide to keep working with your GI, he or she will likely eventually put you on Rifaximin, and you may or may not get temporary or longer-lasting relief from your symptoms, but of course because your intestinal anatomy, it is reasonable to assume that you will keep getting SIBO-symptoms regardless of how well one round of eradication goes. Regardless of whether you take the antibiotic or go the herbal route, it is helpful to journal when you start, what your dose is, how many days in you felt the worse, when you felt better, those sorts of things, because (sadly) the cycles will start to blend together and you will want some record of "last May, it only took 10 days to get better and it lasted for a good 11 weeks, but now 7 months later it's been 20 days I'm still feeling rough" ... you may find yourself having to make judgements from those kinds of data points.

Good luck and take care.