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Reply to "Tailbone pain as the main symptom? What is this?"

@Scott F Right now my GI doc isn't saying she wants to do a scope but I'm trying really hard to get an office visit with her soon. The hospital recommended it strongly so I can ask about those things.

I had really good control of my pouchitis using visbiome for a year and I lost control of it around the time I had to take two rounds of Amoxicillin for a tooth abscess. I stopped my Visbiome while taking the Amoxicillin and during that time my pouch was super great. But when that got resolved and I went back on Visbiome I had about a week of control and then it all went to hell. Flagyl hasn't worked, so now she's trying Cipro+Flagyl. I had asked her a long time ago if pouchitis ever becomes resistant to antibiotics when it used to work, and she was like "No not really, I don't see that." And here we are, it seems like it's happening exactly as I predicted. Maybe the whole thing got messed up by the Amoxicillin and it changed my microbiome permanently. It seems like that sort of question can't be answered by currently available diagnostic tools. I used to be a molecular biologist and have done microbiome work in the lab so I know we're kinda far behind in getting what's in the research labs into the hospitals. I wish so much that I could go back to the lab and test myself to answer these questions.

@RHolt

Thank you for your input. I actually have a pretty similar lifestyle as you do except i don't really do FODMAP. My diet leans more vegetarian. I don't drink, or eat white sugar or white flour. I limit saturated fats, too. Sometimes I eat chicken. We do eat a lot of eggs so we're not really true vegetarians. I guess I could try FODMAP but to my knowledge I'd probably need to get one of those breath tests done where I can see WHICH of the FODMAP compounds I can't tolerate so that I"m not cutting out foods unnecessarily. When I had UC I went on a lot of crash diets and hyper-restrictive fads that never worked and it gave me an eating disorder so I have to be very very careful how much restricting I do for my mental health.

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