I have hydrogen sulfide sibo, which is the unusual kind of sibo and it causes me a lot of issues. Have tried Rifaximin but it did nothing. Any advice?
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so sorry about your sibo. do you know about the low FODMAP diet? it is tough to get onto, but not impossible. helps to have a dietitian guidance. usually one stays on it for six weeks and then introduces one food at a time to determine the trigger. do a search on this site and the internet for extensive info on low FODMAP.
in my experience-- patient experience, as am not a doctor--rifaximin is not the solution. sibo doesn't get resolved through meds.
hope you can get this resolved soon. best wishes, jan
@jan15 posted:so sorry about your sibo. do you know about the low FODMAP diet? it is tough to get onto, but not impossible. helps to have a dietitian guidance. usually one stays on it for six weeks and then introduces one food at a time to determine the trigger. do a search on this site and the internet for extensive info on low FODMAP.
in my experience-- patient experience, as am not a doctor--rifaximin is not the solution. sibo doesn't get resolved through meds.
hope you can get this resolved soon. best wishes, jan
Thanks!
Yeah I have tried most diets and stuff, so that’s not helping me unfortunately. There is many ways to get rid of it, but it can be very complicated sadly.
have you tried the lowFODMAP diet in particular? another thing that I found helpful was to keep a food dairy along with symptoms. that is how one doctor suggested low FODMAP, which greatly helped me. adhesions were my other problem, which were most likely caused by extensive endometriosis. it's tough situation. need to persist! keep us posted please as we all learn from each other and help each other. jan
@jan15 posted:have you tried the lowFODMAP diet in particular? another thing that I found helpful was to keep a food dairy along with symptoms. that is how one doctor suggested low FODMAP, which greatly helped me. adhesions were my other problem, which were most likely caused by extensive endometriosis. it's tough situation. need to persist! keep us posted please as we all learn from each other and help each other. jan
Reducing/avoiding foodmaps only help if you have a hydrogen or methan overgrowth. Hydrogen sulfide is a strange one where sulfur is the problem, so things like meat, eggs, a lot of vegetables can be a problem. I don’t really believe diets can do anything else than reduce symptoms, you need the right antibiotic (whether that’s pharma or natural herbs). In addition finding out your underlying issues, which for a lot of people is MMC and a bad diet.
Last year I wound up treating SIBO indirectly.
after I tested positive via the breath test, my GI prescribed xifaxin, but insurance denied it.
While waiting for the appeal, at the same time I was being treated for a recurring unrelated UTI.
I took Bactrim for over a month and both UTI and SIBO were cured (at least for that moment).
when I told my GI, he was not surprised as his treatment protocol is xifaxin, doxycycline and then Bactrim.
@New577 posted:Last year I wound up treating SIBO indirectly.
after I tested positive via the breath test, my GI prescribed xifaxin, but insurance denied it.
While waiting for the appeal, at the same time I was being treated for a recurring unrelated UTI.
I took Bactrim for over a month and both UTI and SIBO were cured (at least for that moment).
when I told my GI, he was not surprised as his treatment protocol is xifaxin, doxycycline and then Bactrim.
Wow, that’s interesting!
what kind of sibo did you have?
and did it stay away or did it come back?
I actually also was put on Bactrim accidently haha, all though that was due to pneumonia from Humira. I was resistant to it unfortunately, so it did not do a thing. I am considering asking my doctor for Augmentin, which is something that can work for hydrogen sulfide sibo, especially if bactrim failed.
may I also ask why you were put on it for a whole month, sounds really long? Given that you had uti issues it very well could be hydrogen sulfide, I have chronic uti issues which is supposed to go away if you kill the hydrogen sulfide overgrowth.
thank you so much!
I was on the bactrim for a month to treat the recurring UTI. And I did fail the hydrogen breath test. My SIBO was awful as I thought my BMs smelled like horse manure. 😲
Now it’s a year later and I have not had another UTI or return of SIBO since.
I am assuming a short course of Bactrim would not work, but augmentin is a no go for me. Post takedown redo, it wrecked my pouch function and I thought my intestines were exploding. 😣
@New577 posted:I was on the bactrim for a month to treat the recurring UTI. And I did fail the hydrogen breath test. My SIBO was awful as I thought my BMs smelled like horse manure. 😲
Now it’s a year later and I have not had another UTI or return of SIBO since.
I am assuming a short course of Bactrim would not work, but augmentin is a no go for me. Post takedown redo, it wrecked my pouch function and I thought my intestines were exploding. 😣
What you are saying is really fascinating. If you failed a hydrogen breath test I am even more sure it possibly could be hydrogen sulfide sibo. It often looks like a flatline on the breath test for hydrogen.
Hopefully I can tolerate the augmentin better than you haha. Did you tolerate the bactrim fine, I think bactrim and augmentin are prettt similar in that they both are broad spectrum antibiotics?
very glad to hear that you problems went away. Hopefully augmemtin will do the same for that bactrim did for you 
@New577 posted:I was on the bactrim for a month to treat the recurring UTI. And I did fail the hydrogen breath test. My SIBO was awful as I thought my BMs smelled like horse manure. 😲
Now it’s a year later and I have not had another UTI or return of SIBO since.
I am assuming a short course of Bactrim would not work, but augmentin is a no go for me. Post takedown redo, it wrecked my pouch function and I thought my intestines were exploding. 😣
I do see a lot of people doing well on augmentin here in the forum, but I guess it’s just really individual? Probably a lot to do with which bacteria is in your intestines. Rifaximin is supposed to be super safe, and it made me feel super exhausted and gave me diarrhea so idk. According to a stool test showing Staphylococcus Aureus overgrowth in my small intestine I believe Augmentin could be something that could work. I have tried rifaximin, metranidazol (helped a tiny bit) and next is augmentin.
Thanks.
I could not get insurance to approve Xifaxin in 2021.
now I have Medicare part D and the copay cost is just too high, (and I have a very good plan where most of my copays are zero).
I am sure my augmentin experience is mine alone and I never know how Mr. Pouch is going to react to any food or drug.
@New577 posted:Thanks.
I could not get insurance to approve Xifaxin in 2021.
now I have Medicare part D and the copay cost is just too high, (and I have a very good plan where most of my copays are zero).
I am sure my augmentin experience is mine alone and I never know how Mr. Pouch is going to react to any food or drug.
May I ask what was your symptoms in detail when having sibo? Did you notice like a huge night to day difference once the Bactrim worked and you got rid of it? Hydrogen sulfide usually is having diarrhea, very foul smelling gas, uti, reacting to meat eggs broccoli and other sulfur foods.
Seems like so much is highly individual yes. I follow a canadian doctor who recommends bactrim or augmentin for hydrogen sulfide sibo, since bactrim didn’t work I gotta try augmentin. He does say some patients are resistant to one of them, but that the other works.
I had a lot going on at the time including cuffitis, but yes diarrhea and the most awful foul smelling gas of my life. It smelled like horse shit!
I wasn’t even trying to cure it with the bactrim. I kept myself on bactrim for a month to keep the UTI away.
then one day my gas , diarrhea and stink stopped and I called my GI and he was pleased to hear because the xifaxin was never going to be approved.
was doxycycline ever suggested for you? Others here have talked about it working for SIBO and my GI does prescribe it if needed.
@New577 posted:I had a lot going on at the time including cuffitis, but yes diarrhea and the most awful foul smelling gas of my life. It smelled like horse shit!
I wasn’t even trying to cure it with the bactrim. I kept myself on bactrim for a month to keep the UTI away.
then one day my gas , diarrhea and stink stopped and I called my GI and he was pleased to hear because the xifaxin was never going to be approved.
was doxycycline ever suggested for you? Others here have talked about it working for SIBO and my GI does prescribe it if needed.
How interesting, happy to hear that!
No, I haven’t really heard about doxycycline. I don’t know if it’s effective for hydrogen sulfide but maybe it’s something I can bring up to my doctor. Doctors here in Scandinavia are really strict about prescribing antibiotics and only give minimal dose.
Fredz,
thank you for the info regarding connection btw UTI/SIBO.
I never thought of it nor did any of my doctors.
its unbelievable that I gain more knowledge from this group then anywhere else!
thank you again👏👏👏
@New577 posted:Fredz,
thank you for the info regarding connection btw UTI/SIBO.
I never thought of it nor did any of my doctors.
its unbelievable that I gain more knowledge from this group then anywhere else!
thank you again👏👏👏
I should be thanking you! Might hit you up with a message later if I do have some more questions, hope you don’t mind
Take care!
Absolutely, reach out to me anytime,
My SIBO wasn’t specifically identified as any particular type, but it was nicely cleared up with doxycycline. I did have to take it for several months.
@Scott F posted:My SIBO wasn’t specifically identified as any particular type, but it was nicely cleared up with doxycycline. I did have to take it for several months.
Wow, several months? Mind me asking what were your symptoms and if you had diarrhea? And did it come back or are you good now?
My major symptom was excessive gas, but I don’t remember it as foul-smelling. I never know what a J-pouches means by “diarrhea,” but I don’t recall having any of the three key symptoms (watery stools, urgency, frequency) except as clearly caused by gas (I went more often, but mainly to relieve the gas). If I had foul-smelling, watery stools I’d be very careful to rule out C. diff.
The treatment worked, and the SIBO did not return.
@Scott F posted:My major symptom was excessive gas, but I don’t remember it as foul-smelling. I never know what a J-pouches means by “diarrhea,” but I don’t recall having any of the three key symptoms (watery stools, urgency, frequency) except as clearly caused by gas (I went more often, but mainly to relieve the gas). If I had foul-smelling, watery stools I’d be very careful to rule out C. diff.
The treatment worked, and the SIBO did not return.
Yeah, unfortunately many things can cause bad smelling gas, have been tested previously but yeah will test for it.
C. diff is very hard to test for after recent antibiotic use. There can be frequent false negative results.
@Scott F posted:C. diff is very hard to test for after recent antibiotic use. There can be frequent false negative results.
I don’t think it’s c diff, just a serious sibo case really. Have been tested previously.
just curious if you were on probiotics before you were diagnosed with SIBO? cuz probiotics are not meant for the small intestine and can cause SIBO actually. Not sure why docs are telling jpouchers to take probiotics. Dr Shen states not to and instead do green tea extract instead
Docs are telling J-pouchers to take probiotics because studies have shown that probiotics reduced incidence of pouchitis. VSL #3 and Visbiome are lableled specifically for J-pouchers. I understand that Dr. Shen may now be recommending a different approach to his patients, but let's not overstate this. There's plenty of uncertainty here, and humility is warranted. I'm not aware of evidence that probiotics (or yogurt, for that matter) cause SIBO.
Early on I thought I had pouchitis. I tried Visbiome, it did not help, so I abandoned it as a therapy. My GI explained to me that the small intestine (specifically the pouch) was going to get populated with bacteria that was never meant to be there, and thus probiotics to counter that bacteria. I never understood the whole science behind it, and never understood how a hydrogen breath test diagnoses SIBO but the 1-2 month course of bactrim for my UTIs ended it and it has not returned.
I’ll know when I have it again cause I am on daily canasa for cuffitis prevention, so if the very foul smelling stools return it will probably be SIBO and not pouchititis or cuffitis.
everybodys system is different and while we all share common problems I think that our experiences will be just different enough to confuse the heck out of us and thus some therapies will work for some but not others.
this probiotic debate is a perfect example.