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SIBO forever due to ileocecal valve removal?

Digestive Health | Last Active: 6 hours ago | Replies (6)

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@beebe

It is good that you are reaching out to the Mayo Clinic connect group as from experience we probably have more suggestions for you than most Doctor's. My ileocecal valve was removed along with my cecum, appendix, and portions of my small and large intestine. I was prescribed Cholestryamine for the resulting Bile Acid diarrhea. I purchased compounded Cholestryamine on-line from a lab in California as I did not want the dyes and additives the regular stuff contains. Without the additives it smells like fish and coats your mouth like sand. I packed it into a gel cap to get around having to drink the stuff. It really helps but works a little too well. At 1/8 tsp I got severely constipated so found an alternative.
Calcium carbonate is constipating for me, so as my daily calcium supplement it works great. You can make it with eggshells or purchase it on-line from Swanson Vitamins.
Please avoid using Citracel as the methylcellulose fiber in it damages the lining of the small intestine which will lead to leaky gut and more food sensitivities.
There is a great FODMAP app that will help you determine what foods are high in the different sugars and gives you the "safe" amounts to eat.
https://www.monashfodmap.com
Everyone is unique in what works for them. I have been on this journey for 10 years and am finally healing. Using Citracel set me back a bit. My digestion improved remarkably since adding potatoes, lentils, and shell beans like garbanzo's. In the beginning I stayed within the FODMAP portion size recommendations and have slowly been able to increase portion size for some items.
Beans are a great source of fiber and nutrients, if they give you gas Wal-Mart sells a generic Beano that works well. Regular brand name beano has mannitol in it and that on its own can cause gas so is best avoided. I seem to be sensitive to additives, maybe from the Citracel damaging the mucosal lining of my small intestine. I avoid all of the fake sugars that end in "ol".
From trial and error you will figure out how many carbs you can tolerate a day. You have to use caution with the FODMAP diet as you can eat the recommended amount for a specific food but go over your "safe" carb level by eating too many portions of the specific carbs that bother you. (Tomatoes, melons, apples all have fructose so eating all of them at one meal in large enough portions may cause gas).
Good luck and be patient!

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Replies to "It is good that you are reaching out to the Mayo Clinic connect group as from..."

Do you feel like time helped too? I’ve noticed time has helped but I’m still struggling. I have tried what seems like every medication and diet with no luck. I’m wondering if I have an allergy or something? Flagyl is the only thing that has helped but I can’t take it forever.