SIBO due to ileocecal valve removal

Sorry you have this problem in your life. Has the doctor told you what kind of gas you are producing (hydrogen, methane, hydrogen sulfide)? I assume your main problem is diarrhea? Are you experiencing bile acid diarrhea as well? And have you tried rifaximin?

The standard answer is berberine and oregano oil for 4 weeks. You can start getting fancy with biofilm disruptors and s. boulardii. Happy to dive into this rabbit hole with you.

@gboi Thank you. No my GI has not told me which SIBO I am suffering (!!!) and getting worse daily. Dr just ordered a breath test to shipped to me. Worried how long they will take & be processed therefore have not tried rifaximin. Out of desperation I started berberine & oil of oregano few of days ago - but every day my symptoms worsen so I’ve stopped
And I’m suffering presently …diarrhea, loose stool, slow mobility, pain, throbbing & feeling generally unwell & can’t sleep

I was diagnosed with bile acid malabsorption (not via any tests) and finally prescribed a bile acid binder - worked for awhile but that medication ending up causing diarrhea- per my GI, stated that condition can correct itself over time & had me stop taking

Can you share more about biofilm disrupters & s. boulardin? I’m desperate for help, relief & daily symptoms are worsening

@allioops
Any relevant details you can give about how long ago you had the surgery, the underlying condition that caused it, and when you started experiencing SIBO-like symptoms and what else you have "ruled out"?

I ask because SIBO is hard to diagnose concretely and looks like other conditions. Of course, if you're missing your IC valve, it's a lot more obvious to consider.

Berberine and oregano oil can cause diarrhea and GI distress on their own, even in healthy people taking it for non-GI related issues. People may start with just one 400mg berberine dose a day and work their way all the way up to 2x400 mg twice a day, on top of a comparable dose of oregano oil. But of course some may not ever tolerate that much. Of people who claim success with these two supplements, the theme is usually taking them consistently for 4-6 weeks.

To claw back some quality of life, you probably need to drastically change your diet for the time being. You get diarrhea when carbohydrates make it to the lower part of your small intestine intact. In my experience, the worst compounds for this are the "gums" found in all food - xanthum, guar, carob bean, etc. Your body has no way to digest them, and relies entirely on bacteria to do so. They are tricky to avoid because they are in everything! Bread, yogurt, ketchup, Gatorade!?!? Crazy stuff. For some reason, I and others can tolerate plain white bread pretty well, especially if you just stick to a slice or two at a time. Check the label, try getting it from the bakery section, freeze it in the plastic it comes in and defrost one or two slices at a time. Sadly, rice and potatoes, especially if they have been cooked, cooled down, and reheated, not so lucky. Vegetables and fruits probably need to avoid until you've gotten your situation under control. Dairy has lactose which causes problems on its own. Your best friends are cheeses, meat, eggs, and whatever carb source you find that you can tolerate. High quality chocolate with minimal extra ingredients for morale and calories if that helps.

Again, happy to keep helping you think through your situation.

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.

I had my cecal valve and some intestine removed for a cecal volvulus in January. No history of digestive problems. Quite a mystery. I left the hospital with the advice 'eat anything you want, take Imodium and Citrucil for diarrhea, your bowel will adjust eventually'. Well, it didn't. Tired of the Imodium/diarrhea merry go round, I tried cutting out all dairy, all supplements and drugs that had diarrhea as a side effect, and took Citrucil and Florajen every day. That has worked for me so far. I am now adding back supplements one by one, just to be sure. Good luck!

@allioops
If it truly is a stubborn case of SIBO, you may want to consult a naturopathic doctor , specifically someone who is well versed in gut health
I’ve got a history of ulcerative colitis, which led to colon cancer requiring removal of cecum and illocecal valve, sigmoid, ovaries, appendix and multiple portions of colon and small bowel.
I never had SIBO, but did have diarrhea and feelings of not emptying, plus bad gas.
I think mine was ultimately solved when I required months of IV nutrition for bowel rest (this was to help heal my colon after multiple leaks and problems)

Fast forward 7 years, and my UC is in remission with meds, and I just started a peptide therapy to see if I can heal my gut lining and get rid of lingering inflammation, some of which is caused by the meds.
Often a GI will only look as far as RX meds and not try to identify the causes.
I do eat gluten free and light on dairy, and sadly have found that I have less symptoms of UC when I eat less fruits and vegetables
I think we are prone to a lifetime of gut issues, and I have many friends in the same situation. So many unknowns and each one of our bodies is different.

Thank you! Im at the very least thankful for these online forums for help as I completely agree (and totally) frustrated with GI Dr’s, seem not to listen after waiting for appointments & tests then rushed out. Seem only look to push RX meds that (mostly) do not help & I throw away, order tests that never provide any conclusive answers a not try to identify the causes, ever
I will definitely look into naturopathic doctor, along with looking into Citrucel and Florajen Thank you very much for your response & help. Best of luck & health to you too!

@54pontiac Same after my colon resection - no advise, diet, medication, explanation of what I may experience Suffered with (supposedly) untreated bile acid diarrhea for a year - can’t image damage caused by that alone
Just recently off BAM meds & trying to manage with Pepto as for me, Imodium
seems stop diarrhea but slows down my ability to eliminate - which is awful & painful Thanks for response and suggestions of Citrucel and Florajen (haven’t tried either) Wish you all the best in health

@allioops and PS my GI Dr rolled his eyes when I told him that I refer to online groups like Mayo Clinic for any guidance & help from others suffering similarly