Connect
← Return to SIBO and rifaximin
Discussion
Comment receiving replies
@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!
Replies to "@bapetersen wondering what happened that resulted in no IC valve for you? I also no longer..."
@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.
Connect
@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!