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IBS-C or SIBO recovery

SIBO xifaxan diet prokinetic constipation repeating hydrogen test

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#1 pattyf

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Posted 21 February 2017 - 09:55 PM

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I am a new member; this is my first post, though I've been very actively looking at past threads to find solutions for what has now moved from IBS-C to SIBO.

 

Quick summary of recent history: 

 

Starting around June, 2016, I haven't been able to eat much without getting uncomfortably bloated with trapped gas. To feel better, I'd shift to "simple" foods, like rice porridge, eggs and yogurt. My system would recover in a week and I'd start to eat normally again, with salads, vegetables, rice and chicken or fish. Starting in early July things got more problematic, with worse episodes requiring almost no food at all to get to a semi-recovered state. Found a G.I. doctor in November who had me do a CT-scan, an endoscopy and a colonoscopy with no troublesome results. In January, because I asked, she let me do the lactulose hydrogen breath test. My hydrogen level ramped to 149, while methane went from a baseline of 4 to about 15. So, definitely SIBO. This is somewhat understandable since I've had chronic constipation all my life. What worked beautifully for me for four years was taking 4-5 150 mg. tablets of Magnesium Citrate, but that stopped working and now just makes the bloating worse.

 

Treatment has been standard: 14 days of Xifaxan, combined with Neomycin, and now Prucalopride (a prokinetic), 1 mg. 2x a day. Nothing seems to be making much difference. I've eliminated so many foods from my diet, it's hard to get enough calories. I've been trying, with some variability, to follow low Fodmaps (which often conflicting info.), SCD, Bi-phasic Sibo diet designed by Dr. Nirala Jacobi, read articles by Dr. Mark Pimentel and also read lots and lots of posts here.

 

What I'd like to know is: Will this ever get better? Have any of you had a real recovery? And if there is a diet out there that works well, would you please, please post a reply? I'm close to desperate at how little I can eat, have lost 15 pounds and see little chance of gaining it back at this point. 


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#2 flossy

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Posted 22 February 2017 - 10:25 AM

Hi Pattif -

 

This has pretty much all the info I've accumulated from my past 4 or 5 years with chronic constipation (click on below link to read):

 

http://www.ibsgroup....tion-aka-ibs-c/

 

Hope it helps & keep us posted!



#3 Jay25

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Posted 23 February 2017 - 01:00 PM

Hi Pattyf,

 

Did you redo the breath test after taking the antibiotics for SIBO? And are the symptoms the same as before you were treated? I had really bad SIBO ~2 years ago, and was treated successfully with the same antibiotics and also the elemental diet. However, my symptoms went from gassy/bloated/loose stools and constipation (stools were loose but wouldn't pass) to hard stools and even MORE constipated. It's so bad that my lung capacity is probably at least 50% decreased from the bloating. I seem to be the only person I've come across who has had this issue after treating the SIBO, so I'm interested in your case. If you still have the same SIBO symptoms, I'd suggest (in my personal, non-medically trained opinion) to re-test with the breath test and if SIBO is still present, try the elemental diet. Antibiotics have something like ~70% success rate (if i remember correctly), but I've been told by doctors that the elemental diet is more effective. FYI it is rough, but you gotta do what you gotta do.

 

Best, 

 

Jay



#4 pattyf

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Posted 26 February 2017 - 03:44 PM

Oddly, my G.I. doctor did NOT want a repeat of the hydrogen breath test after the Xifaxan, followed by a month of a restricted diet. She said we'd just "treat the symptoms", which is very puzzling, since the symptoms aren't being treated at all. Maybe she's banking on the Prucalopride working at some point in the next decade. Frankly, I would prefer to take your personal, non-medically trained opinion over hers.

 

So, to your point, Jay25, I have definitely had the breathing capacity feel reduced, when the gas production was very high, but since taking the Xifaxan and eating cautiously, I haven't had that recur. It's very unpleasant and frightening, though. One time I thought it might be my heart and went to urgent care. 

 

Props to you and everyone who can do the elemental diet! I just don't think I could do it. It does sound very rough. 



#5 ChrisJenas

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Posted 27 February 2017 - 03:56 PM

Hi pattyf

I am having the same issues as you for the last 7.5 years. All I can say is that I have tried several diets (except Low Fodmap) and none of them work. You start of on a diet and then you give up on it since it's so hard to follow. The nature of SIBO is such that for you to not feel bloated you have to have a very very restrictive diet, which realistically is not possible. I believe in Mark Pimentel"s theory and I am hopeful that his research will eventually lead to a cure in IBS-C and hopefully in the reinstatement of the migrating motor complex ( hopefully within the next 3 years). All this bloating sensation and constipation is due to migrating motor complex not functioning. I suffer from bloatedness and constipation each day. But depriving myself of food through diets that don't work makes me more unhappy, hence I prefer to eat what I want and eliminate dairy products, spicy foods, junk foods and sugary foods. Let us wait and have faith in Dr. Pimentel.

Regards
Chris

#6 flossy

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Posted 27 February 2017 - 04:39 PM

If interes

 

Hi pattyf

I am having the same issues as you for the last 7.5 years. All I can say is that I have tried several diets (except Low Fodmap) and none of them work. You start of on a diet and then you give up on it since it's so hard to follow. The nature of SIBO is such that for you to not feel bloated you have to have a very very restrictive diet, which realistically is not possible. I believe in Mark Pimentel"s theory and I am hopeful that his research will eventually lead to a cure in IBS-C and hopefully in the reinstatement of the migrating motor complex ( hopefully within the next 3 years). All this bloating sensation and constipation is due to migrating motor complex not functioning. I suffer from bloatedness and constipation each day. But depriving myself of food through diets that don't work makes me more unhappy, hence I prefer to eat what I want and eliminate dairy products, spicy foods, junk foods and sugary foods. Let us wait and have faith in Dr. Pimentel.

Regards
Chris

 

If anyone is interested here is a long interview with Mark Pimentel, MD:

 

https://chriskresser...-mark-pimentel/



#7 Jay25

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Posted 27 February 2017 - 04:45 PM

pattyf, your doctor not wanting a repeated test after the antibiotic treatments is extremely odd, especially since it is common for Xifaxan (and all other antibiotics) to not work or for SIBO to return quickly. The nurse practitioner I was seeing had me take a breath test on the last day of treatment. I even ordered another on my own a few months later, just to be sure. You may want to consider ordering a test on your own if the doctor is unwilling. 

 

I actually just started another 2 week round of the elemental diet yesterday. My theory is that even though my breath tests showed that the SIBO had been cured, it's possible that my gut was repopulated with bacteria that my body was not used to (maybe due to the brand of probiotics I had taken). So I'm trying to start off with a clean microbiome slate and try a different probiotic, hopefully not having to repeat ad nauseam . It's sad, but with the negligence of many GI doctors, sometimes one has to become a patient and their own doctor simultaneously (but I still consult with doctors that I trust to make sure I don't do something really dumb).

 

If indeed you are cured of SIBO but still have bad symptoms, feel free to contact me with any questions (or answers!) that you might have.


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#8 richgel999

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Posted 28 February 2017 - 11:31 AM

Yes, it's possible to recover from SIBO. I've done it. But for me, it took a bunch of antibiotics to eliminate whatever bacteria was causing me problems, and almost a year to recover. SIBO can be very hard to beat. Personally, the idea of living with SIBO and just trying to treat the symptoms would be maddening. 



#9 AlisonfromSickofIBS

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Posted 17 March 2017 - 05:31 AM

I have just posted on the subject of SIBO and Candida, and what worked for me.

You might find this useful:

 

https://sickofibs.co...thing-part-one/

 

https://sickofibs.co...-and-candida-2/

 

Hope this helps you,

 

Alison



#10 Raw015

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Posted 18 July 2017 - 05:19 AM

pattyf, your doctor not wanting a repeated test after the antibiotic treatments is extremely odd, especially since it is common for Xifaxan (and all other antibiotics) to not work or for SIBO to return quickly. The nurse practitioner I was seeing had me take a breath test on the last day of treatment. I even ordered another on my own a few months later, just to be sure. You may want to consider ordering a test on your own if the doctor is unwilling. 

 

I actually just started another 2 week round of the elemental diet yesterday. My theory is that even though my breath tests showed that the SIBO had been cured, it's possible that my gut was repopulated with bacteria that my body was not used to (maybe due to the brand of probiotics I had taken). So I'm trying to start off with a clean microbiome slate and try a different probiotic, hopefully not having to repeat ad nauseam . It's sad, but with the negligence of many GI doctors, sometimes one has to become a patient and their own doctor simultaneously (but I still consult with doctors that I trust to make sure I don't do something really dumb).

 

If indeed you are cured of SIBO but still have bad symptoms, feel free to contact me with any questions (or answers!) that you might have.

did you use the absorb plus diet?







Also tagged with one or more of these keywords: SIBO, xifaxan, diet, prokinetic, constipation, repeating hydrogen test


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