SIBO
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crohnsinct
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There was a time they thought O had SIBO. The symptoms are very similar to Crohn's symptoms so hard to tell actually. She did a couple of courses of Cipro, Flagyl, Xifaxan, various other antibiotics. Then we treated bile acid diarrhea,I forget the name of that drug off hand. Nothing helped. Turns out it was her Crohn's all along because as soon as we bypassed her crummy colon she started feeling better.
There is a pretty famous SIBO doc (NYC) and protocol. I looked into it when they thought O had it and it sounded very promising but I never truly felt that she had SIBO.
There is a pretty famous SIBO doc (NYC) and protocol. I looked into it when they thought O had it and it sounded very promising but I never truly felt that she had SIBO.
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I don't have experience with SIBO but my daughter was put on Xifaxan for "post-infectious IBS" after getting C.Diff many times (6 times I think) before we did an FMT, which got rid of the C.Diff but she continued to have diarrhea, cramping and abdominal pain. That was when she was put on Xifaxan for post-infectious IBS. We were told it's also used for SIBO. It did help her somewhat but she had trouble tolerating it, so we eventually stopped it and the IBS resolved over a couple months.
Hi. Crohns is stable, thank goodness. Yes, still on Remicade.
SIBO symptoms include abdominal pain/ cramping, worse after eating, constipation and diarrhea, fatigue, brain fog.
Pains so bad she can’t get out of bed and afraid to eat.
3 cycles :14 days of Xifaxan, 14 days of VSL3.
Add visceral hypersensitivity and you have a kids who can’t function.
Also- consultation w an abdominal pain program this week…..
SIBO symptoms include abdominal pain/ cramping, worse after eating, constipation and diarrhea, fatigue, brain fog.
Pains so bad she can’t get out of bed and afraid to eat.
3 cycles :14 days of Xifaxan, 14 days of VSL3.
Add visceral hypersensitivity and you have a kids who can’t function.
Also- consultation w an abdominal pain program this week…..
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The pain program definitely sounds like a good idea. Pain that severe does sound like amplified pain. My daughter has struggled with it for years. Unfortunately, it doesn’t go away, but they do learn to cope with it and once they become more functional, usually the pain does reduce. Staying in bed has probably caused deconditioning which increases pain. I know it’s really, really hard and she may not be able to do it till the program, but she should try to get out of bed and at least do school work at a desk. Distraction really helps with pain. Exercise also really helps (and by exercise, I mean baby steps - a short walk down the street, physical therapy etc).
There is a great book you can get on Amazon called Conquering your Child’s Chronic Pain. When my daughter did the pain program, they recommended that I read it before the program because it really explains chronic pain well and how it needs to be treated. They also had my daughter read it because she was in her late teens and she said she learned a lot from it.
Please feel free to PM me if you have any questions about amplified pain (it’s called amplified pain typically when it’s musculoskeletal and visceral hypersensitivity when it’s belly pain but essentially it’s pain that is disproportionate and debilitating).
There is a great book you can get on Amazon called Conquering your Child’s Chronic Pain. When my daughter did the pain program, they recommended that I read it before the program because it really explains chronic pain well and how it needs to be treated. They also had my daughter read it because she was in her late teens and she said she learned a lot from it.
Please feel free to PM me if you have any questions about amplified pain (it’s called amplified pain typically when it’s musculoskeletal and visceral hypersensitivity when it’s belly pain but essentially it’s pain that is disproportionate and debilitating).
DustyKat
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My daughter, adult, has been diagnosed with SIBO. Symptoms of bloating, abdominal pain and diarrhoea that is out of the normal range for her. She has had a right hemicolectomy so is at greater risk of developing SIBO.
She had felt for some time that her symptoms pointed to SIBO but it took 9 months or so for her to convince the GI to test. The breath test was positive for both hydrogen and methane. She was prescribed Xifaxin and refused by insurance. To throw even more confusion into the mix at this time was she booked to come back home for a visit to Australia. So when the hospital pharmacy rang to say they had enough supply for her it was too late for her to obtain them.
So now in AUS she goes to see the family GP. He is shocked by her appearance, weight loss, and tries to get her GI in the US to send a letter here so he can prescribe Xifaxin but no luck. Xifaxin is restricted here. GP researches it and prescribed her Septrin Forte and Metronidazole for 14 days. Fabulous results within a couple of days but symptoms came back within a week or two of stopping.
Now back in the US she has had her course of Xifaxin without gaining the same results. Then Xifaxin and Neomycin which made no difference.
GP here reckons she needs to go back on a course of Septrin Forte and Metronidazole then drop back to one Septrin Forte and one Metronidazole 200mg a day for 3 months. I think my daughter will hit the GI up about it at her next visit in December. Not sure how receptive they will be to it but will know soon enough!
Note - bloods and scope done this month indicate she in clinical remission with her Crohn’s
She had felt for some time that her symptoms pointed to SIBO but it took 9 months or so for her to convince the GI to test. The breath test was positive for both hydrogen and methane. She was prescribed Xifaxin and refused by insurance. To throw even more confusion into the mix at this time was she booked to come back home for a visit to Australia. So when the hospital pharmacy rang to say they had enough supply for her it was too late for her to obtain them.
So now in AUS she goes to see the family GP. He is shocked by her appearance, weight loss, and tries to get her GI in the US to send a letter here so he can prescribe Xifaxin but no luck. Xifaxin is restricted here. GP researches it and prescribed her Septrin Forte and Metronidazole for 14 days. Fabulous results within a couple of days but symptoms came back within a week or two of stopping.
Now back in the US she has had her course of Xifaxin without gaining the same results. Then Xifaxin and Neomycin which made no difference.
GP here reckons she needs to go back on a course of Septrin Forte and Metronidazole then drop back to one Septrin Forte and one Metronidazole 200mg a day for 3 months. I think my daughter will hit the GI up about it at her next visit in December. Not sure how receptive they will be to it but will know soon enough!
Note - bloods and scope done this month indicate she in clinical remission with her Crohn’s
Sorry that she is dealing with this but it's good that she finally has the SIBO diagnosis and that her GP seems to be knowledgeable.
Was she able to gain weight with the antibiotics? And if so, has she lost it again?
I sincerely hope she gets some help from her GI soon. The GI could possibly want a repeat breath test to document that she still has it but should certainly have some kind of effective plan... one would hope.
This article below, which touches on SIBO says 44% of people have symptoms again after 9 mo and sometimes rotating antibiotics are 1-2 weeks each month.
"SIBO is characterized as relapsing because after receiving the first successful dose
of antibiotics, approximately 44% of patients suffer from the same symptoms again after
nine months. Based on the severity of the symptoms and their rapidity of return, patients
usually need to follow a regimen of rotating different antibiotics. This rotation is followed
for 1 to 2 weeks each month. Once in a while, some patients need to follow a continuous
regimen of antibiotics. However, this kind of treatment has not been studied enough. In
most cases, the patients are tested for SIBO before the new antibiotic therapy [29]." from
Gastrointestinal Tract Microbiome Effect and Role in Disease Development
N Crnčević, M Hukić, S Deumić, A Selimagić, A Dozić… - Diseases, 2022 - mdpi.com
Sending healing thoughts her way and a hug!
Was she able to gain weight with the antibiotics? And if so, has she lost it again?
I sincerely hope she gets some help from her GI soon. The GI could possibly want a repeat breath test to document that she still has it but should certainly have some kind of effective plan... one would hope.
This article below, which touches on SIBO says 44% of people have symptoms again after 9 mo and sometimes rotating antibiotics are 1-2 weeks each month.
"SIBO is characterized as relapsing because after receiving the first successful dose
of antibiotics, approximately 44% of patients suffer from the same symptoms again after
nine months. Based on the severity of the symptoms and their rapidity of return, patients
usually need to follow a regimen of rotating different antibiotics. This rotation is followed
for 1 to 2 weeks each month. Once in a while, some patients need to follow a continuous
regimen of antibiotics. However, this kind of treatment has not been studied enough. In
most cases, the patients are tested for SIBO before the new antibiotic therapy [29]." from
Gastrointestinal Tract Microbiome Effect and Role in Disease Development
N Crnčević, M Hukić, S Deumić, A Selimagić, A Dozić… - Diseases, 2022 - mdpi.com
Sending healing thoughts her way and a hug!
DustyKat
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Thanks xmdmom and thank you for the link. 
I shall pass it on.
She was starting to gain weight on the initial course of antibiotics. All symptoms had resolved and in her words, “I had forgotten how good I could feel.”
She is now back square one.
She has tried the SIBO diet, low fodmap & specific carbohydrate, without success. Fermented foods and drinks are suggestive of being beneficial for SIBO but my daughter was using fermented drinks at the time her symptoms commenced and she feels they were the cause of her developing SIBO. I don’t know if she equating correlation with causation.
I don’t know when she will visit AUS again but if she has no success with the GI over there the GP here is ready to pounce on things.
I shall pass it on.She was starting to gain weight on the initial course of antibiotics. All symptoms had resolved and in her words, “I had forgotten how good I could feel.”
She is now back square one.
She has tried the SIBO diet, low fodmap & specific carbohydrate, without success. Fermented foods and drinks are suggestive of being beneficial for SIBO but my daughter was using fermented drinks at the time her symptoms commenced and she feels they were the cause of her developing SIBO. I don’t know if she equating correlation with causation.
I don’t know when she will visit AUS again but if she has no success with the GI over there the GP here is ready to pounce on things.
