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SIBO due to ileocecal valve removal
Digestive Health | Last Active: Aug 28 6:23am | Replies (22)Comment receiving replies
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.
Replies to "4 years ago right colectomy: for Diverticular w/ acute inflammation. Removed: part of small intestine consisting..."
@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.
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@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.