Permanent SIBO due to removal of ileocecal valve
Is there anyone who has no cure options for SIBO due to the removal of the ileocecal valve? If so, how do you minimize possible long term damage to your intestinal tract? Do you find that digestive enzymes, L-Glutamine, Enteragam or any natural supplements aid in a healthier immune system? if so,
please pass along your best advice. Thanks.
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SIBO is side effect
Thank you so much for sharing your history. I also had the same surgery for the same reason in 2015. My doctors never believed the significance of how it changed my life. And continued to get worse. Diarrhea, occuring unannounced, in my pants, when i was out. I stopped going out, became weak, with chronic fatigue, muscle tenderness, weakness, brain fog and rashes on my finger. Finally, I have a gastroenterologist who believes in SIBO. I have finished my third course of antibiotics. Diarrhea returns about 2 1'2 weeks after I complete them. I will ask about Xifaxan when I see him next week. I have regained some weight finally, and I am going for long walks. It is sad though. That symptoms return.
It really is hard to deal with during flareups. I'm sorry you are having problems. Enlist your Drs help to maybe get patient assistance to help pay for this crazy expensive drug.
My surgery was 50 years ago! I have had b12 shots monthly forever and take extra vitamin d and potassium. All necessary. A few months ago the diarrhea became so bad the I too felt I was destined to become homebound, due to the urgency and accidents. A new gastro suggested I take Welchol, a medicine for cholesterol that has the side effect of constipation. I started slowly- 2 pills per day, now at 4. My diarrhea is back to my "normal" and manageable. No urgency. It is a miracle. Not a well known cure- most gastros don't even know to try this. Read about it and suggest it to your doctor. It is an off label use for Welchol. It saved my life!
I see my gastro on March 2nd. Your reply is timely. I have written down the guidance you provided and I will tell him about it. Thank you so much. I want to be able to make plans with friends and not have to cancel. Ugh.
Xifaxan, or rimifaxan is what I take for chronic SIBO. It's very very expensive. Have your doctor do a hydrogen breath test to check for SIBO.
Thanks for the information very helpful I would also add that recently I have found adding a pro kinetic like motegrity has helped me a lot. according to Dr. Pimentel it can give you several more months of relief post anabiotic’s as well bismuth the active ingredient in Pepto-Bismol has helped me. I do believe I have hydrogen sulfur Sibo so that’s something to look into if you haven’t determined your exact type of SIBO
All the best
We seem to be the lucky ones. I don't understand how any good dr can refute the possibility of SIBO with our histories,
I finished my third round of antibiotics and had my follow up with the gastroenterologist a week ago. Prior to my surgery I had chronic constipation and learned after my surgery my colon twisted becasue it wasn't anchored. From the time I was a small child I suffered from horrible constipation probaably due to intermittent twisting. Anyway, my GI now has me on IBgard 2x per day, Align 1 x per day and Colace everyother day. I still don't know when bowel movements will become normal. It has only been 1 week on this regimen and I have had 1 bowel movement. But no pain or diarrhea.
I will keep you posted. We will see how long this lasts. He said recurrent intermittent antibiotic treatment will be necessary. Thoughts?