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Permanent SIBO due to removal of ileocecal valve

Digestive Health | Last Active: Apr 2 6:54am | Replies (191)
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@meganarant

My ileocecal valve was removed in 2019 as part of an emergency surgery.

In 2020 I got extremely ill, and multiple GIs thought it might be Crohn’s. I was put on a course of xifaxin given I definitely had sibo without the valve. I got better fast

Since then I have had to take a course every 4-7 months. My Mayo GI makes jump through hoops everytime to prove it isn’t another infection (labs, office visits, absolutely miserable stool tests) despite the symtoms being exactly the same everytime and it being her office that told me this would reoccur multiple times a year.

So there is hope, xifaxin for me (I know it doesn’t work for everyone) makes me feel better every time but the fact I am going to have to be turned inside out at least twice a year or more to get the medication we know works, is an absolutely terrible prospect, and if I ever lose my health insurance, I will be back in 2020, a shell of myself and unable to leave my house.

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Replies to "My ileocecal valve was removed in 2019 as part of an emergency surgery. In 2020 I..."
grace29 | @grace29 | Nov 8, 2023

Your Doctor should make arrangements for you to get this antibiotic for much less.
Many people buy through Canada.

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gboi | @gboi | Nov 8, 2023

Hello,

Sorry that you're going through this ordeal, I am in a similar boat with constantly having to fight for a medication that seems to obviously help me. Of course, your doctor is concerned that you may have some other digestive disease lurking - was there a solid reason for your emergency surgery or it is possible that you may have undiagnosed Crohns?

What seems to work for me and others is once getting diagnosed and a treatment plan set out by "top specialists" like the Mayo Clinic, take your paperwork to a regional doctor and kind of "self-direct" your treatment. Your new doctor will either be on board, or they will not. It is okay to shop for doctors.

That said, again try to understand your doctor's hesitancy to re-prescribe Rifaximin, again due to concerns of undiagnosed digestive disease or something else.

Good luck.

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