Permanent SIBO due to removal of ileocecal valve
Is there anyone who has no cure options for SIBO due to the removal of the ileocecal valve? If so, how do you minimize possible long term damage to your intestinal tract? Do you find that digestive enzymes, L-Glutamine, Enteragam or any natural supplements aid in a healthier immune system? if so,
please pass along your best advice. Thanks.
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Sadly, no. I waited months to see the “best” surgeon in SLC and he could not have turned me away faster. He said the only way to get rid of the sibo symptoms was to get a permanent ostomy bag. I’m still not sure what to do. Can’t take antibiotics due to neuropathy from Flagyl. Diet doesn’t work either. I take laxatives to help move things through me so nothing can ferment but that’s about all I have.
I'm sorry that the surgeon was unable or unwilling to help you. I just don't understand why I find articles describing the surgery, but then I can't find anyone who performs it. Mayo does far more complicated surgeries than this one seems to be, like all kinds of bypasses and transplants. I guess I'll keep looking, but it's frustrating to say the least. All the best for you.
I’m new to this discussion and am finding it helpful. I had a sub-total colectomy - I have about 9 cm of colon - and removal of my ileocecal valve in 2007 at the age of 54 because of a serious genetic disease, FAP, that results in colon cancer. About five years after the surgery, I started having severe gastrointestinal issues and couldn’t get a diagnosis. I was finally diagnosed with permanent SIBO and have since tried everything to reduce the symptoms - diet, probiotics, rotating antibiotic regimens - and nothing worked for any length of time. A lot of SIBO research is being done at Cedars Sinai and I’m now following their recommended SIBO diet and eat only three small meals a day, no snacking, and wait at least four hours between meals. I take L-glutamine, fatty 15, magnesium, berberine, get a B-12 shot one a month and have stopped taking antihistamines for my seasonal allergies. All that works to some degree but I still get debilitating SIBO flares which are now more frequent and last longer. I’ve looked in to the elemental diet but worry it would be at best a temporary fix and am now considering ileocecal replacement surgery. Has anyone on this thread had the surgery? If so, what was the result? From what I’ve read thus far, it may be the best treatment for permanent SIBO.
I am not giving up hope of finding a surgeon who performs ICV replacement surgery for my husband. I found an article from Boston Medical Center on it and others as far back as 1981. It's not a new idea and there has to be someone who does it. We are currently scheduled for a consultation at Mayo, but I know it is a first step at best. I'll post an update once there's something to share. db
Hi all. I hope this can help some. Please look into Low Dose Naltrexone (LDN). This is a prokinetic and it helps me with my Crohns/SIBO and I had a right colectomy surgery. You can research and see many benefits of LDN for SIBO.
I take 3 mg every night. You can get it from ageless RX. Make sure to titrate up such as starting with 0.5-1.5mg and working up to 3 mg. Some takes upwards of 4.5mg but I find 3 mg is the good spot for me for SIBO and diarrhea symptoms.