Sorry your your in so much distress Most GI Doctor do an incredible job but ours is a disease of exclusion and there isn't a whole lot of time in an appointment to get things done. So it is on us to participate. For me "food is medicine" check out this brilliant blog https://www.ibsfree.net/news Also check out the work at Hopkins being done by Dr Jay Pasricha

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Did you find anything that helped? Struggling a lot with this. Took amoxcicilin-clav, xifaxan and now on herbals berberine/oregano/Allicin. Waiting for Atrantil and GI advantage for repair. Its hard to tolerate water at this point. I suspected this last April and GI doctor couldn't test because of Covid. He just said IBS and gave me antidepressant and bentyl which actually slows motility and I think I have that. I lost 30lbs in 2 months from pain after I'd eat. I had a rib surgery that left me constipated for 10 days and all the pain meds made it worse. I was finally tested in January. Anywho!! I have very little relief and I dont know who to turn to.
Thank you!
Aimee

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I've been on lowFod 7 weeks and now 2 weeks and taking herbals reccomended by siebecker. Very little difference and I've been on xifaxan too 🙁 nothing is helping me. Water hurts.

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I can totally relate. I got started getting sick about three years ago. I got worse over time. I kept telling doctors I think it is related to my gastric bypass done four plus years ago. They said it is not probable. I saw all types of specialists. In February I tried a pill cam because I swore I had crohns. Covid hit and it was so difficult to get anything done. In may i was going to have laparoscopic surgery but it got converted to open surgery (no visitors). Got out felt ok for a bit. And the gi symptoms started up again. I kid you not that when it was bad I would burp 1000+ in an hour ( there’s an app for that). They threw every antibiotic under the sun at me. Some worked short term. But got worse. Went in for a balloon dilation two times after the first surgery. The second baloon dilation in August doc had to stop that procedure and admit me for another emergency surgery. Surgeon said it was the second most complicated surgery of his career. While healing from that, symptoms got worse. Finally received the results from the sibo breath test done in March that resulted in both hydrogen and methane gas. It got missed originally because gi doc thought it was just a blockage. Since January 2021 I started rifaximin and I’ve stayed on it since. Obtained about 60% improvement. Recently added another antibiotic with the rifaximin. I’m now at about 70 to 80%. But I’m scared too. I still have what I call episodes where I’ll get crazy tremors inside and out, brain fog … it is even difficult to form sentences when that happens. A couple positives is that my stools are starting to be a little more regular and I’ve stopped fainting and falling. I still wake up about every three to four hours at night. I work from my bed on my laptop most days. I have to get iron infusions every month. I don’t drive hardly at all. I just want this to be over. The one thing I have learned is that you HAVE to be your own advocate and push when necessary. I started off thinking it was in my own head and minimizing my symptoms until they took over my life and I did that initially because the first couple doctors weren’t taking me seriously because of clear test results. I fired them and found a good gi doc and the best surgeon and am thankful to them for giving me a sliver of my life back. Sorry for the book. I just want to encourage you and anyone else that reads this to not give up.

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I was put on every recommended antibiotic too. After almost two years later I am on rifaximin which we all know is very expensive. I had some ok results from that but continued to struggle until I found a physician paper on recommended treatment. For people with both hydrogen and methane gas stubborn sibo, they recommended 1600 mgs of xifaxan/ rifaximin a day for 12 weeks in combination with 750 mgs of metronidazole for two weeks. I’ve stayed on the rifaximin for a few months. My gi doc recommended ordering it from Canadaprescriptionsplus.com.
Because I can get 90 days for about $240. It takes a few weeks to get here but the cost savings is worth it. Don’t give up! I’m not 100% but I am better.

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Did you find anything that helped? Struggling a lot with this. Took amoxcicilin-clav, xifaxan and now on herbals berberine/oregano/Allicin. Waiting for Atrantil and GI advantage for repair. Its hard to tolerate water at this point. I suspected this last April and GI doctor couldn't test because of Covid. He just said IBS and gave me antidepressant and bentyl which actually slows motility and I think I have that. I lost 30lbs in 2 months from pain after I'd eat. I had a rib surgery that left me constipated for 10 days and all the pain meds made it worse. I was finally tested in January. Anywho!! I have very little relief and I dont know who to turn to.
Thank you!
Aimee

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I decided to join this discussion as it appears that I am now in what I call the SIBO limbo or no man’s land. From reading these posts it seems like my struggle has just begun. My symptoms began in mid July and it is believed that two consecutive rounds of antibiotics to treat two different conditions triggered it. I cracked a crown in late May and ended up with an extraction and implant. I took an antibiotic then but can’t remember what it was. Then I went for my annual physical in late June and was prescribed Clindimycin for a UTI. Symptoms of diarrhea, gas and bloating started about a week after I finished the Clindimycin. Long story short, my internist thought I had contracted CDiff from the Clindimycin and put me on Flagyl for ten days and performed a stool test which came back negative. The Flagyl helped for a week but then the symptoms restarted. My internist basically dismissed me at that point and told me to find a GI doctor, which took a few weeks and lots of phone calls. The GI doctor performed some routine blood work which was normal, and sent me for a CT scan of my belly, which fortunately also came back normal. He diagnosed me with SIBO and dysbiosis based on my symptoms (no breath test) and put me on another round of Flagyl. The cost of the Xifaxan would have been nearly $1500.00 for two weeks. So I took the Flagyl again since I tolerated it the first time. It helped for about two weeks and I then gradually slid back to the loose stools and lots of gas. He also put me on a low FODMAP diet, which helps a little but does not eliminate symptoms either. I have lost 15 pounds in three months due to diarrhea and being afraid to eat anything. I had a routine colonoscopy last year which was normal and I think that is why the gastro doctor is not in a rush to do another one (plus the normal CT scan). So here I am. I am not on medication right now, not eating much, afraid to eat anything. I am not even sure I have the correct diagnosis, but too many carbs make me gassier and when I am gassier I also tend to have looser stools. I go to work but rarely socialize with friends because it all revolves around food. Thankfully I am married and my husband has been very supportive. I cry a lot and have dark moments when I think I have cancer or will never be well again. I am afraid of what the gastro doctor will say when I see him next or that he will tell me there is nothing else he can do for me like my internist who basically abandoned me. How long have other group members been coping with this and what has helped? I am now researching a diet called the specific carbohydrate diet. Anyway, feeling desperate and looking for solutions like all of you. Thank you for “listening.” I hope I can also be of support to others here.

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