My SIBO Story (part 1) - What is SIBO & How it has Effected Me

in #health5 years ago (edited)
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Wow, what a story! I started reading your second post about this and decided to read the full thing here. Yeah, I know like no other how some health 'professionals' can let you go from one test to the other while you've given them the answer all along. If they'd only listen to their patient's 'gut feeling' (see what I did there?) more, I think some people could be spared unnecessary prodding, testing, and medication that possibly causes more harm than anything else.
6 courses of antibiotics in 4 years is madness if you ask me!

Anyway, I am rooting for you that this 'diet' will do what you need from it. And hoping that it won't put you through too much crap. I'd say the first few days will be the hardest since the body will be adjusting to this new thing. And the die-back...yeah, never pretty, but I'm sure with all that you've already gone through, this will be easier to bear if you keep the results in mind. I've had my share of die-backs due to some cleansing I've done, and what I always noticed is that it's also a time in which I get confronted with myself in a huge way. So I always use this miserable time to reflect on my life and the things I really don't need in it (and to get rid of). It's a major game changer to me!

Please keep Steeming your experiences!
I wish you all the strength and power you need to get through this time and a major breakthrough at the end of the tunnel.

Much love from a shitty, rainy Ireland :)

Ha ha, 'gut feelings' I love it 🤣

Yes, it's a crazy story and when I read it back I realize how much this, and many other chronic conditions, need more research. Also, a less egotistical more holistic approach from doctors. You're right in what you say about how many courses of antibiotics I was given, I've researched it myself and they may have message things worse tbh.

I'd say the first few days will be the hardest since the body will be adjusting to this new thing.

Funnily enough nothing major seems to be happening yet, and I'm on day 3. I'm waiting for severe dieback symptoms but I think it might take up to a week to kick in. There's just so many of the little buggers in there where they shouldn't be. But I shall win 🧐 fck, I'm not looking forward to the cold shivers, emotional spikes and toilet symptoms in not gonna talk about in civilized company 😅

Thanks for the love and well wishes from Ireland me dear. It's appreciated 🙂

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A tremendous story about an ailment and determination to find the cause over here my friend. May you be guided to find the solution and all of the best with the fast!
Blessings!

Thank you... I'm trying with all my determination to find a solution 🙂

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Just catching up on what I’ve missed during a very busy few days. This is such interesting info. Kudos to you for being able to capture all this in a way that makes sense to the rest of us, @raj808. I know you’ve been suffering with this for a long time and would dearly love to get your health back! And I really hope you are on that path.

Obscure medical issues are so hard to cope with. Traveling both the traditional medicine route and the natural medicine route seems smart. You can ultimately try more things and choose from a greater set of resources. But how frustrating that you’ve had to do so much of your own research, you couldn’t get your doctor to listen to you about the SIBO test, and you have had to take so many antibiotics, which have proven to be ineffective and may have exacerbated the issues. This is a long journey indeed.

I’m hoping the elemental diet is the answer!

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Thanks for your kind words @jayna

I'm on day 8 of this elemental diet now and boy I can tell you it's tough.

I know you’ve been suffering with this for a long time and would dearly love to get your health back! And I really hope you are on that path.

But... it will be worth it... I've got to believe that things will improve soon. So far, it's just made me sicker... Apart from one anomalous day 2 days ago where I felt kinda better. All the things I've read says that the bacterial die-back starts between day 9 - 11 so I guess the best is yet to come 😂

I will never let this shit beat me!

Thanks again for your encouragement. It's much appreciated 🙂

Woah!!! Thats insane. I had no clue how complex it was and the degree to which it affects a person. Hectic!!! And hats off to you because despite it, you continuously stand strong and keep pushing forward... quite amazing actually. xxx

Hi @jaynie.

Thanks for your kind words and you're right, it is insane how complex SIBO is and how badly it can effect someone. I'm a severe case btw, some people find relief from antibiotics and many of the other treatments I describe, and lots of people only have a few symptoms.

Lol, I'm not someone who ever wants to complain. Which is probably why I've never written about this before but this diet is most probably going to make me very sick before it makes me better. I've sort of wrote this - and part two coming tomorrow - as explanations to everyone I know why I might disappear over the next 20 days.

Once the bacteria start dying they basically throw out poison as a defense mechanism, (it's called die-back in detox circles) and because I have such a large overgrowth, I suspect it is gonna be really bad. Like in bed 16 hours/day bad. We shall see. I'm gonna steem as much as I can, if I can, and I pre-recorded my push up videos for #Seven77 for nine days so I'm set for the first part of this crazy treament ;-)

Thanks again for checking out my post :)

You really have done an insane amount of research! I am glad to have had this refresher course on the mechanics of SIBO. I can't seem to find a definitive answer on whether Kombucha is good for this condition or not. The internet is a difficult place to do research after realizing even your functional doctor is a complete quack. The stuff seems to be helping in some ways. Will be interested in seeing updates on how the Ele(mental) diet is working for you...going crazy in the process seems like the hardest part. Our gut health is important to be full body healthy in a lot of unexpected ways...and just now we are discovering how much.

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Hi @creativesoul

All the research I've done seems to suggest that probiotics are not a good idea until you've killed the overgrowth. So, after treatment, and a successful negative breath test, some practitioners seem to suggest that you take probiotics, but certain ones, not the traditional lactobacillus acidophilus which is in so many supplements. I'm not sure if that is in Kombucha but I suspect it might be.

The probiotic that I've heard mentioned over and over as helping with IBS (which is so often actually SIBO) is bifidobacterium infantis. But, having said that, this study I found seems to suggest that it helps decrease Hydrogen prevalent SIBO, but increases Methane prevalent SIBO. It is such a complex thing, and it's liek hitting a needle in a haystack finding what works for you. I have heard theories that good bacteria can out-compete the bad if supplemented after a successful kill phase, so my guess is that it works for some and not for others. That has been the one constant I've seen on the internet, different things work for different people and the doctors, functional or traditional, don't know why.

https://www.ncbi.nlm.nih.gov/pubmed/29397491

The stuff seems to be helping in some ways. Will be interested in seeing updates on how the Ele(mental) diet is working for you...going crazy in the process seems like the hardest part.

but it looks like you're saying that you're using Kombucha and it's helping? Are you diagnosed with SIBO? Or just taking it generally for gut health or to relieve more generalized symptoms? Whatever the case, I'm glad it's helping you :)

Thanks for checking out my post

Will be interested in seeing updates on how the Ele(mental) diet is working for you...going crazy in the process seems like the hardest part.

Ha ha, yes staving off food cravings and boredom are going to be hard.... and dealing with the bacterial die-back when it starts. Lot's of baths and meditation to try and relax as much as possible when those little buggers start to try and poison me 😅

I have been diagnosed with SIBO...after being misdiagnosed with Celiac Disease and then IBS for over eight years total. I still get severe reactions to wheat and gluten...but can't figure if that's an allergy or related to the SIBO or something else. Since winter...I have been on my own trying to figure out how to cure this stomach monster. The last thing the SIBO doctor told me...is that if no negative reaction or symptoms occur keep doing them. And I love kombucha anyway. Not the most rational way to go about it...because sometimes you just don't know about the deeper effects. The die back is brutal...maybe you can listen to audiobooks?

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@creativesoul: You write that you get severe reactions to wheat and gluten...An important thing to keep in mind here is that ALL kinds of wheat (yes, even the ancient spelt) are GMO. There's almost no getting around it. Gluten allergies are something quite new, and I blame it on that fact. Personally, I've had a lot of issues with wheat products (it's very hard to get away from) and eliminated it from our diet completely about a year ago. I've replaced it with non-wheat products and our lives have been much better for it.

If it is working, yeah definitely keep on doing it :-) At the end of the day, it could be that you are one of the people where putting lots of probiotics into the system is allowing them to out compete the bad bacteria. But I'm just guessing. I also love Kombucha but it is a no no for me at the moment.

The die back is brutal...maybe you can listen to audiobooks?

Ha ha, yes I'm one step ahead on that one as I have 4 Sci-Fi audiobooks lined up and until it gets really bad plenty of netflix series and a new computer game.... so hopefully boredom won't be quite as bad ;-)

It would be awesome to be one of those people that can get better with competing bacteria. Time will tell!

Glad to see you have plenty of things to keep you distracted and you won't be bored! ❤ 🤗 🙏

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I've only researched SIBO a bit, but it does seem to be quite the challenge to overcome! I'll be sending some good energy your way the next few weeks! I hope after all of this you can find some relief. 🙏

it does seem to be quite the challenge to overcome!

Yeah, if someone has money to throw at it, I think it can be resolved quicker... but even then I've got a feeling it is a case of luck in how entrenched the bacterial overgrowth is. I think I just got unlucky. The symptoms in my case are so severe that I can't work a normal job. It is frustrating in the extreme as it was only 8 years ago I was fit enough to train for and complete an Olympic length triathlon.

Ha ha, I don't even really want to try and do that again, but just back to a normal level of fitness where I can cycle and swim without it causing days of aches and fatigue. But nuff moaning from me ;-)

This elemental diet has 88% effectiveness. I'll be writing more about it tomorrow. My fingers, toes and earlobes are crossed that it will be successful ;-)

Thanks for the good energy and for checking out my post plantstoplanks :-)

I don't blame you for not wanting to do an Olympic tri again, haha, but as someone who really enjoys daily activity I can only imagine how frustrating it must be to not be able to do even that!

Happy to put out some good energy! I'm sure they'll be some challenges ahead, but with all those body parts crossed I'm sure you'll make it through like a champ! :)

That's an insane amount of research. I guess.you've tired fasting for multiple days? Not eating would seem to be a logical step. Obs there's only so far you can go with that, but then just introducing a few basic foods and seeing how it goes.

Or is it more fundamental than that?

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It's much more fundimental than the that, yes. I have tried fasting in the past and experimenting with food reintroduction and there was never any difference in the result. As soon as I start eating, I blow up like a balloon and my other symptoms slowly intensify. Even when fasting, I am what other people would call bloated. Or they'd just assume I ate loads, or had just gorged myself.

The elemental diet, which I'm gonna write about in-depth tomorrow, and I'm on my second day of right now, is basically what they give comma patients. Pre digested food in its elemental form.... Ha ha, but I'm not gonna say anymore cause I don't want to reveal the whole interesting insane truth until tomoz post 😄😉

Cheeky bloggers tactic 🤣

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Well that does sound fascinating!

wow that is pretty full on , all that you had to go through to get diagnosed and the amount of treatment that you tried. I have never heard of this, you really seem to have done your research on this and you are so right you have to find what worked for you as we are all different, so of course we respond differently to different treatments xx

Hi @trucklife-family

Yeah, it has been a struggle tbh as I had big plans to become a digital nomad and travel the world while earning from freelance writing. I also had an idea for a FBA business to set up some extra passive income... but this condition really is much to severe to risk setting off into the wild ;-)

It's massively frustrating as the combinations of saymptoms, particularly brain fog, nausea and fatigue just leave you unable to do anything. Don't get me wrong, it comes in waves; so some weeks I am less effected by the symptoms, like the intensity is less. But they're always there, at the moment I wouldn't even have the energy to set up the FBA (fulfilled by amazon) business to get me started on the path to travelling freedom that I dreamed about. If I get well, that will be a different story as there is one positive I've taken from this 6 year sht show; that's to not take anything for granted, especially health. If I get mine back I'm going at life full-on 100% joy and experiences. As much as I can in this short life :-)

Thanks for your comment :-)

@raj808 I'm so fascinated by the whole balance we try to achieve between doctors and our own understandings. Its so important to INSIST on these tests and trust our own intuition and knowledge and research, which doctors often dismiss.. either coz they are arrogant or just too busy to listen to. Funny I was just reading about oregano oil and SIBO but wasn't entirely sure what that was... now I know!!!

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Hi @riverflows

Yeah, balance is key in so much. It's been a struggle tbh maintaining any type of balance in the last year particularly as this illness has ramped-up a gear and especially as the fatigue and brain fog have intensified. I was at least able to write and earn consistently when they were less intense. Before all this started, I had big plans to become a digital nomad and travel the world while earning from freelance writing... but this condition really is much too severe to risk setting off into the wild ;-)

It's massively frustrating as the combinations of symptoms, particularly brain fog, nausea and fatigue just leave you unable to do anything. Don't get me wrong, it comes in waves; so some weeks I am less effected by the symptoms, like the intensity is less. But they're always there, at the moment I wouldn't even have the energy to set up a passive earning business to get me started on the path to travelling freedom. If I get well, that will be a different story as there is one positive I've taken from this 6 year sht show; that's to not take anything for granted, especially health. If I get mine back I'm going at life full-on 100% joy and experiences as much as I can in this short life :-)

Funny I was just reading about oregano oil and SIBO but wasn't entirely sure what that was...

Yeah, it is a powerful anti-fungal anti-parasitical anti-bacterial natural medicine. I may actually be using it in the final week of the (elemental diet) treatment I've just started and will be making a post about today.

Thanks for your comment, I appreciate everyone's support on this post :-)

Come chat about it in NM. Someone might be able to help. Sending you love and strength and healing to get on with your nomad dream!!!

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I've got to be honest, I've done so much research on this and had to sift through so many varying opinions that the last thing I want to do is run over everything I've already discussed in forums, Facebook groups and with various people for years again.

It gets exhausting. I really do appreciate where you're coming from though, and that it's meant in a spirit of wanting to help in my healing. After I've finished this treatment I'm about to post about, I'll drop in to NM for chats and comparisons of ways to heal etc.

What I've found with SIBO is that there are so many conflicting opinions/treatment paths, that you can get pulled this way and that, when what is needed is just to go through the different healing protocols systematically. One by one.

This is why I'm focused on the elemental diet right now. I'm flat broke, in debt up to my eyeballs, so this medical option is my best option right now as I'm in the UK and the NHS pay for it. After all my doctor bashing in this post 😉 this is actually the first time they've relented and given me treatment I suggested because I found clinical trial reports so they couldn't say no.

Thanks again for the love and support. I hope you understand my reasoning for wanting to stay focused at this time and I'm really fatigued at the moment so I just don't have the energy for chat rooms etc.

Once I've finished this post I'm writing, I'm taking at least 3-4 days off from steem and the internet in general to focus on my mind and meditation. Being gentle and kind to myself basically, to improve the overall process of this treatment.

Thanks for the detailed insight into your health journey. Good to see that you are on top of it. Three things need to be addressed immediately in life - fire, debt and disease.

Ha ha, couldn't agree more but I would replace 'fire' with 'happiness'. But debt is the last on my agenda because my health is at the point where it has effected my ability to earn enough but the bare minimum to survive. I'm afraid the debtors will have to wait ;-)

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