After Genova Lab analysis, doc is recommending Xifaxan (Rifaximin) for SIBO. I'm nervous! Any advice?

Xifaxan didn’t help my chronic pouchitis, but it’s generally very well tolerated, since it mostly stays in the gut rather than being absorbed into the blood. For most people the biggest discomfort with XIfaxan is paying for it.

I don’t know how many J-pouch patients your naturopath has treated (the most likely number is zero), but neither she nor anyone else really knows what constitutes a healthy J-pouch microbiome.

Have you been tested for C. diff? That seems more consistent with your symptoms than SIBO. I don’t know enough about Genova Labs to judge their reliability.

Perhaps you could look with determination for a GI with appreciable experience taking care of J-pouchers? An academic gastroenterology department might be a place to start, or a colorectal surgeon’s office might be able to suggest a referral.

Thank you for your thorough reply, Scott, much appreciated. Good question on the C Diff, I tested negative. I have tried finding a doc at our sole major teaching hospital, University of Washington, Seattle, but they said it was "normal" to have diarrhea with a j-pouch. The three colo-rectal surgeons who performed the original and subsequent surgeries said diarrhea was not their thing and referred me to an infectious disease doc. The Infectious Disease doc prescribed a course of Flagyl - I vomited it up after 5 doses, couldn't keep it down. When I asked him what else we could try his exact words were "Learn to live with it - there isn't anything else." Wow.

Even though I am wary of the naturopath (I am not proud of this, but I have never seen a naturopath so have no experience) she is the very first medical professional who knew what I was experiencing and asked a ton of questions - how much diarrhea, how often, when, color, consistency, cramping, bloating, gas, pain, etc - questions no other doc has asked. She used terms like "shortened anatomy" leading to complications, explained the likelihood of SIBO due to food that normally goes to the large intestine instead sitting in the small intesttine and she ordered the extensive Genova Labs testing before proceeding. Again, no other doc has done any of this. She has a single specialty - GI issues. That's it. She doesn't see patients with other issues. Her plan is to wipe the small intesting clear of bacteria, then carefully introduce pre and pro biotics to build a healthy environment. She is working with the insurance company to get them to pay for the Rimaxifin, but if they won't go for it, she will use another approach.

Sorry for the long response! I do appreciate your questions. If I were going to spend $2100 on a drug, I would spend it to go to the Cleveland Clinic and get someone's opinion there. I have found ZERO docs in the Pacific Northwest with any interest in jpouch life.

The word “diarrhea” probably causes more confusion than communication for J-pouchers. I’d recommend separately talking about stool consistency (e.g. “watery”), frequency, and level of urgency. J-pouchers can sometimes have more watery stool, though it should probably get thickened up if it’s more than occasional, but urgency is never really normal with a J-pouch, unless you *really* waited too long to get to the toilet. Frequency varies a lot, but a healthy, well-functioning J-pouch usually leads to about 4-6 poops/day.

What your naturopath is describing is essentially a highly simplified FMT (fecal microbiota transplant), substituting a probiotic for the transplanted stool. I don’t know if it will help, but it probably won’t hurt.

@Scott F Boy, howdy, you hit the nail on the head with "The word diarrhea probably causes more confusion than communication for J-pouchers." I will be mindful when I talk with the naturopath.

I have thought of trying to come up with easy to understand ways to describe diarrhea - maybe in a similar vein to the urban myth that the Inuit language has 50 words for snow. I will use phrases like "end stage colonoscopy prep diarrhea" or "ordinary food poisoning diarrhea" etc. To be accurate, one needs to define the consistency, force of expulsion, color, slime/no slime, "oil slick/no slick" on top of toilet water, accompanied (or not) by cramping, gas, stomach ache, etc. YKWIM. All j-pouchers know what I mean.

By my reckoning, diarrhea is at it's worse when it is clear water with no flecks of anything else - that's a "10" on a scale of 1 to 10. A "10.1" is clear dark brown water, 10.5 is clear brown-mustard water and 10.9 is almost clear, light, light yellow with an oil slick floating on top - that's blastocystis hominis diarrhea. At least for me that's the worst.

Ahhh, falala, nice weather here. It's snowing again. For real. Not a reference to words for snow! Or anything else. Thanks again for your great help. You are a real mensch.