← Return to Permanent Sibo due to ileocecal valve removal

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Permanent Sibo due to ileocecal valve removal

Digestive Health | Last Active: Nov 26, 2023 | Replies (7)

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@gboi

Hey there - sorry about the issues you are facing.
I also have had my ICV removed due to strictures from Crohn's Disease, and suffered and continue to suffer from SIBO, but I am making progress.

There are a lot of good ideas posted already but most of these are specific to people with a normal intestinal structure (not modified through surgery), who develop SIBO for other reasons. Even though the final disease is still SIBO, the root cause is different so treatment has to be different.

First, you should strongly consider getting a colonoscopy done so that a doctor can evaluate how your surgery healed and how well your surgeon did in making the connection flush. Basically, I suffered for years because my resection was not flush and there was a 10cm dead-end pocket where food would accumulate and be fermented by bacteria, leading to SIBO which effectively destroyed my quality of life. Solution was, unfortunately, to get another surgery to make the connection flush. And more unfortunately, I was not "cured" immediately after the surgery, it took a round of oral neomycin for 4 weeks to finally kill off the bacteria (I had been cycling rifaximin for years at this point and it is reasonable to assume that the bacteria in my gut were resistant to it. We also tried conventional antibiotics like doxycycline and flagyl - only gave me about 2 weeks of remission each time, those gut bacteria are very resilient).

Basically, you should strongly consider getting a colonoscopy done to see if your anatomy gives you a fighting chance to get rid of the bacteria, if not, unfortunately another surgery may be on the table.

If your intestines look good, you unfortunately need to consider bringing out the big guns to get rid of the bacteria in your gut, especially if you lost response to rifaximin.

Next, and this is the boat I am currently in, is that you need to come up with a maintenance strategy. I continue to have intestinal issues although not nearly as severe as even a year ago. Probably a combination of minor Crohns and minor SIBO. Probably need to figure out a combination of rifaximin or any of the myriad herbals/botanicals to keep the small intestinal bacteria population in check.

Hope this helps - happy to brainstorm with you if you want to talk to someone who has been in your shoes.

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Replies to "Hey there - sorry about the issues you are facing. I also have had my ICV..."

Thank you for your comments and insight. The surgery that I had in 2021 was done by a different Doctor that I am seeing now i was unhappy after the surgery about the quality of care i was getting so i went about to find a new doctor and it wasn't until I saw this new gi Doctor and he performed a colonoscopy in August of 2022 that this Doctor told me for the first time to my knowledge that my surgery was done unusually done and that I didn't have a ileocecal valve anymore I was stunned to find out this information I was never told prior to this that the valve was removed. But I am not sure about the connection being flush I have a appointment in two weeks I will definitely ask him about that. When I saw my gi in April he did mention that surgery was another option but we didn't dive deeper into it at the time but it's looking like it might be my only option. I am tired of just not being able to eat even a slice of gluten free bread I basically drink all of my meals except for the cream of rice and lactose free milk and soy milk. This has bin going on for almost two years now like you say it's about the quality of life and right now it's terrible so I hope I can get to some solution even if it means having another surgery.