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SIBO - need help and advice

Sibo Gas Flatulence Bloating Constipation Antibiotics

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#1 GilmoreGirl

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Posted 19 March 2018 - 08:52 AM

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Hi all,

Im so fed up! I have been suffering with sibo symptoms for a long time, but they got really bad last year after taking morphine for a couple months for an unrelated painful injury. My gp and I discovered that antibiotics seem to make me feel better. I did the breath test and was SUPER positive (>70 units) for methane sibo. Ive been on rifaximin alone twice, metronidazole alone once, and metronidazole + rifaximin once - all times my symptoms seem to improve, but then are back a week after stopping the antibiotics. Im now on a herbal antimicrobial protocol (including allimax) but my symptoms are just getting worse and worse as the days since I stopped taking the antibiotics go on.

Ive tried everything - extreme low carb dieting (which I continue to do), elemental diet (could not last more than two days - caused vomiting), etc. I have a prescription for a prokinetic but my naturopath says to wait until weve completed a few rounds of antimicrobials to start it.

I also have the STRANGEST cyclical symptoms that come and go extremely regularly. My gp and naturopath dont know what to make of this. My symptoms go as follows:

- all of a sudden (normally in the evening) get really gassy, lose appetite, have extreme fatigue and get dizzy easily
- next day gas continues - it gets worse and is extreme - huge flatulence every few minutes 24/7 with foul odour. Lots of bloating and pain and discomfort along with this. I also have sudden onset of constipation - when I do go it is very greasy and loose
- this continues for about two days. Then gas starts to subside, appetite and energy returns.
- next day bowel movements are normal and I feel much better
- I feel good for 2-3 days then the symptoms return

Its been cycling like this since June. Im going nuts. I feel so gross and horrible. Cant go to school or work reliably because I can never predict how Im going to feel. Has anyone had any luck actually getting rid of their sibo? Will this ever stop? Has anyone had similar symptoms in that they are cyclical like this?

Im honestly finding it hard to continue on like this - if you have any advice I would really appreciate hearing it.

Thanks everyone!

#2 MKW

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Posted 20 March 2018 - 09:21 AM

Hi, I was diagnosed with hydrogen dominant SIBO finally after going to doctors for 8 months with symptoms. I had been a recurrent C Diff sufferer and had a fecal transplant in March 2017. About 8 weeks later I started with symptoms. I had so many tests run on me, and finally I asked for a SIBO test.
Because of my c Diff risk (I will likely always be a carrier) they recommended I see a nutritionist for the herbal protocol instead of taking Rifaximin. What herbal regimen are you doing?
I swear I cant find a thorough competent practitioner to save my life, literally. This nutritionist started me on a protocol, then a week later randomly emails me and says she is altering it to include some other drug... then that made me sick, I had to drop my dosage and start over... she seems like shes just guessing. My GI doc that referred me to her now has left the practice.
This crossover between conventional and naturopathic medicine is scary, because none of them seem really knowledgeable.

#3 GilmoreGirl

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Posted 20 March 2018 - 11:34 AM

Hi, thanks for your reply! Sorry youre suffering too, its totally debilitating. The protocol my naturopath has me on started with two weeks of rifaximin + flagyl. We then started alimax (2 pills 3x daily with food) and an sibo tincture that includes berberine and some other ingredients (cant remember now - but I can dm you later with the exact details. As well, I take a biofilm disruptor. Im in the middle of this part now, and shes just switched me to a more powerful biofilm disruptor - the idea being that I have had this for so long that the bacteria have really set up shop. After two weeks of this I will switch to a different anyimicrobial protocol for two weeks, then alternate back. The idea is to continue this until my symptoms start to improve (including maybe repeating antibiotics) and then add in the prokinetic (prucalopride).

I gotta day Im a scientist and a lot of this stuff seemed a little far fetched to me (biofilm lol?) but I have done some research and it is all pretty well supported by the limited research and studies that are out there

#4 jza

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Posted 20 March 2018 - 02:46 PM

I've had similar symptoms for over 3 years.. VERY high methane levels as well. Nothing has eliminated it. Tried multiple rounds of antibiotics. Multiple types of diets. The best I experienced was temporary relief from symptoms while on the first course of antibiotics. Subsequent courses weren't as successful. Only had minor relief.

 

For the past several months, my gastroenterologist has had me on Trulance which has significantly decreased the constipation and bloating. However, I have diarrhea daily due to it. It's the lesser of two evils for me.



#5 GilmoreGirl

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Posted 20 March 2018 - 04:11 PM

Thanks for replying jza. Sorry youve also had a tough time of it. I tried a similar medication called Constella, it did nothing but make me uncomfortable. Constipation is not my main issue - its the gas (incredible horrible amounts of gas! Im a gas producing machine). The constipation is just weird because its part of the cycle - I can tell the night before that Im going to not have my regular bm the next day by the way I start losing my appetite and begin to bloat.

Have you tried a herbal antimicrobial/biofilm disruptor protocol? Has your doctor offered any other treatment options?

Has anyone actually beat SIBO at all? I cant imagine spending the rest of my life like this (Im 25). I cant work, or even be in the same room as someone else half of the time. Terrible.

I am hoping that either the new biofilm disruptors or the next phase in the antimicrobial protocol will improve things. If not Im wondering if I should try a longer term rifaximin/flagyl course. Has anyone done this? Like for a month or more? I do have an appointment with a new gastroenterologist (after months of trying to find someone who would see me - they all thought my gp and I were nuts - long story there) so hopefully he will have some ideas.

Also - does anyone know if you can get oral neomycin in Canada? My gp said it was o key available in topical form.

Thanks all for reading.

#6 MKW

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Posted 20 March 2018 - 08:39 PM

I was going to add here... I know in my reading of studies that Rifaximin with Neomycin has a higher success rate. But know nothing about Canada! I know someone who fully recovered from hydrogen SIBo, but not methane. Evidently the approach to methane SIBo has to be different. .. but the friend developed c Diff from the SIBo treatment, and was finally cured by an FMT.
What are the guidelines for FMT in Canada? Here it is still considered experimental, and usually only done for recurrent c Diff. But, there has been speculation it could treat SIBO by creating general balance with the gut microbiome.

#7 GilmoreGirl

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Posted 20 March 2018 - 11:54 PM

Thanks for your input MKW! Im certainly nervous about C Diff - scary thought. It is rarer to get it from taking rifaximin and neomycin as they are targeted antibiotics, but still possible and I have taken broad spectrum twice in the past few months.

FMT is actually becoming pretty accepted as a treatment here in Canada. My gp has mentioned it and has a patient with bad untreatable ibs who has gone for this treatment. It does require some travel to a University hospital that does research on it - but there are a few universities here that are leaders in the field. It may be an option for me at some point if other treatments fail, as I know they have used it for general ibs and tough sibo
Cases.

It is very discouraging that I have seen so little anecdotal evidence of people being cured from methane sibo. Not only this, but the relapse rates in the scientific literature are very high.

Long story short, but Ive had a year from hell. September before last I got injured - and was in extreme pain until April of last year when I finally had surgery. Then since then, Ive been dealing with this friggen sibo in one form or another. I used to be a personal trainer and grad student - now Im at least able to work out again and work on my studies from home - but this stupid disease is keeping me from starting PhD and returning to my personal training clients. And frankly, makes it tough to just live every day life without being overwhelmed with anxiety and depression.

#8 jza

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Posted 21 March 2018 - 07:49 AM

I was about the same age as you when I was diagnosed with SIBO-C so I definitely feel your pain. Yes, it is true the recovery rates for methane SIBO are low and the recurrence rates are very high. My gastroenterologist said my methane levels are so high, and I've responded so unsuccessfully to past attempts at treatment, that my best option is to use prescription laxatives for relief. She told me there are medications in development that are targeted at eliminating methane SIBO, so I have my fingers crossed that one day there will be a cure.



#9 MKW

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Posted 21 March 2018 - 02:01 PM

Hi, so did your doctor attribute the onset of your SIBO to a particular cause? Are you told you have a motility problem that is the root cause? Was it due to your injury or treatment for your injury?... I developed my SIBO after my FMT for C Diff. So there has yet to be a determination as to the root cause for me. I feel like Im doing treatment but even if its successful that it will just come back unless the core physiological flaw is dealt with, unless it was caused by bacteria going into my small intestine from the stool transplant. Its a possibility but now a common outcome of colonoscopy FMT, so I may have another problem.

#10 GilmoreGirl

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Posted 21 March 2018 - 02:26 PM

Thanks jza. My doctor has me taking over the counter laxatives for now, pretty regularly, and it least it provides some relief for a few hours of the day before the bloating builds up again.

MKW, my doctor and naturopath both suspect this has been an issue for me since my teens when I had an eating disorder - this likely started things off, slowed my motility and just flat out messed up my system. My symptoms however got out of control last year, and they think it is because I was taking morphine regularly and not eating much - my motlility did not recover from that (and at one point I didnt have a bm for two weeks and had to go to emergency - not a fun experience. Long story short they cleared me out with a bowel prep but I had just had rectal surgery for a pelvic floor injury and the pain of eliminating so much in such a short period of time was unimaginable...like incredibly painful. Those dang meds are a catch 22).

Could it be that the c diff itself was the cause? Just wiped out the good bacteria and allowed bad stuff to take hold and migrate? It seems as though it wouldnt be the case because c diff = diarrhea but I know many people have long term bowel issues following c diff (most often labelled ibs - but who knows whats what).





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