SIBO and rifaximin

I have permanent SIBO as the result of removal of my ileocecal valve. Before my diagnosis - and before taking rifaximin - I had malabsorption issues and started a gluten and lactose free diet. After my SIBO diagnosis, I was prescribed rifaximin, taking it every other month for just over two years. I take a calcium supplement every day, as well as iron and vitamin D, and get a B-12 shot once a month. I no longer take rifaximin because it doesn’t seem to reduce my SIBO symptoms any longer. I stick to my diet - high protein, no beans or legumes or cruciferous vegetables, very little fruit or leafy greens - and take my supplements and do my best to treat the symptoms when I have a SIBO flare. The only “cure” for my SIBO is reconstruction of my ileocecal valve which I’m looking into.

I have SIBO and am now on an anti-biotic. I couldn't tolerate the xifaxan. I never knew one could have permanent SIBO. You seem to be doing everything right regarding your diet. Good for you. also am gluten and lactose free. When you say you have a flare up, do you mean nausea or stomach pain? Best wishes if you go forward with the reconstruction.

@bapetersen wondering what happened that resulted in no IC valve for you? I also no longer have one due to a cecal volvulous almost 5 years ago. I have been treated multiple times for SIBO with rifaximin and now am on a maintenance dose of 550 mg twice daily. Insurance coverage is a problem of course, and I am waiting for a 50 day supply to be shipped via a Canadian pharmacy. They are backed up, though, and it's taking longer than usual :(. It amazes me that GI professionals know so little about dietary recommendations. They teend to gravitate towards low FODMAP, but tell you not to follow it indefinitely. I have tried a few herbal remedies to treat SIBO in the past with variable results. Abdominal pain, gas, and fluctuations between constipation/diarrhea are my most challenging symptoms to manaage. I use a TENS unit, simethicone and/or activated charcoal caps, and a variety of laxatives, respectively. I am trying to find the right dose of cholestyramine for suspected BAD (bile acid diarrhea), but it fluxuates so much. Definitely a chronic, lifelong, and difficult condition to manage. It helps some to know we are not alone!

@jlstjohn
It does help, and I’ve learned a lot from friends struggling with this same, difficult condition. I was diagnosed with FAP, a genetic disease that increases the risk of developing all sorts of cancers. Most importantly, tho use with FAP have a 100% chance of developing colon cancer, so I had a sub-total colectomy in 2007. (There’s no cure for FAP, but having my 99% of my colon removed makes it far easier to monitor for polyps.) Although my ileocecal valve was removed during the surgery, I didn’t develop SIBO until 5 - 6 years after the surgery. I took rifaximin monthly for many years (also relying on the Canadian pharmacy!) but over time it became less effective. I tried the low FODMAPS diet which I found difficult and ultimately not helpful. I now follow a SIBO diet I found on the Cedars Sinai website that I’ve modified over time - high protein, low carbs, gluten and lactose free, no added sugar. I still get SIBO flares, however, and this past summer has been particularly difficult. A doctor prescribed metoclopramide to deal with low motility issues but the side effects are pretty scary so I haven’t taken it. I’ve read that oil of oregano can help, so that’s next on my list to try. Currently I take a small dose - 25 mg - of amitriptyline (recommended by a friend with chronic SIBO), l-glutamine, and berberine. And because of malabsorption issues, I get a monthly B-12 shot and take iron, calcium and D-3 supplements. I’ll report back on the oregano!

@jlstjohn
You are not alone! There are tons of people on the Facebook SIBO support group.
I’ve been dealing with this since 2021.
It’s pretty frustrating.