Permanent SIBO due to removal of ileocecal valve

Hello pknw, you might want to check out website siboinfo.com...there is all sorts of info on there.

Thanks!

Hello @pknw,

Welcome to Connect. My sincere apologies for the delay in replying, but we've had a few technical changes on Mayo Clinic Connect, and somehow your message slipped past me.

I found a study that researches the link between the ileocecal valve and SIBO, which might interest you: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3520169/

I'd also encourage you to read through some of the posts in this active discussion about SIBO on Connect; I'm confident you will find the members to be an incredibly informative group:
https://connect.mayoclinic.org/discussion/small-intestine-bacteria-overgrowth/
@betterb4 @bearylynn @robbinr have discussed taking L-Glutamine, and I'm sure they would have some insight for you.

@pknw, may I ask what symptoms you are experiencing? How are you managing the SIBO?

@pknw Knocked my socks off when you mentioned removal of your ileocecal valve! I didn't think any traditional MDs even acknowledged the existence of the ileocecal valve. Who diagnosed a problem that required removal? And what was the problem diagnosed?
After two bouts with SIBO, the last gastroenterologist I saw said that the breath tests are not very accurate or reliable, and that often what shows as SIBO is really something else.

I had an encapsulated appendicitis which involved my ileocecal valve, small amounts of both the large/small intestines~all had to be removed. SIBO has become a chronic permanent condition for me, as bacteria has no barrier to block transference from the large intestine to the small intestines and back.
Most SIBO information out there seems to address the need for antibiotics, diet and ways to regain a healthy digestive tract~my
questions are to get answers for how to deal with a 'incurable' SIBO, in hopes to live a long and healthy life as possible.
I think I need a doctor who specializes in SIBO and/or a nutritionist who deals with SIBO issues. Thanks for your interest.

Hi, I have the same problem as you. I just did a round off antibiotic, and am now trying to figure out what to do.

Is there a group blog anywhere on the internet?

is surgery available to replace ileocecal valve or to alter intestines to function as valve?

This is an old post but I found it from searching illeocecal valve and SIBO on google. On August 22nd, 2016 I had emergency surgery due to a bowel obstruction caused from a cecal volvulous. Had a right hemicolectomy with 18" of small intestine removed including the cecum, Illeocecal valve, appendix up to transverse colon which was resected into large intestine. Since then have had problems with SIBO since I have a wide open anastomoses in resected area. No way to keep bacteria from backing up into small intestine. Drs put me on align probiotics 2 months after my surgery which probably made situation w bacteria worse. Anyhow, found a great GI dr who ran some tests and diagnosed off the chart SIBO. Put me on Xifaxan daily and it's a life saver. Today he told me to go off the probiotics since you really don't want bacteria (even the 'good' bacteria in your small intestine. I have been on Xifaxan daily for 1 1/2 years and will be on it lifelong. It's improved the quality of my life 100 fold. Have pretty regular BM with occasional acid bile stools but not very often anymore. I do eat heaithy and stay away from things I can no longer digest like beans. Good luck to all.

For me the diet has been key after antibiotics. No complex carbs that ferment and stay in the gut for the bad bacteria to feed on. I eat protein, fruits and vegetables. Because I lost so much weight, my nutritionist has me taking supplemental enteral shakes (enzymes)which my body absorbs very quickly before the bad bacteria can get a hold of it. It is a very slow healing process. I think diet is a key component of maintaining remission if we can call it that.