On finally being diagnosed, living with SIBO, the road ahead, and how it all makes sense.
Answers. I finally have some answers. I finally have evidence that some of the extreme, debilitating, social-life stealing, soul-sucking symptoms I’ve been experiencing for the past two years are not in my head, but can indeed be backed up by scientific proof and number-defining results.
It’s freeing, in a sense, but the diagnosis itself is anything but, because the diagnosis of SIBO means I have a long road of healing ahead of me.
SIBO – Small Intestine Bacteria Overgrowth (sexy, I know, right?)
In a nutshell, SIBO is when there is too much bacteria in the small intestine. There are a myriad of reasons why this can happen (will get to this in another post later this week), but basically, those little buggers are NOT supposed to be there!
Where are they supposed to be? Well, the bacteria is supposed to live happily in your large intestine, but they’ve found their way to the wrong home!
Why is SIBO a big problem?
Well, SIBO is an issue because it causes a lot of symptoms and creates a cycle of poor digestion, leading to issues throughout your entire body (remember, the gut-brain connection is a real thing).
With the bacteria in your small intestine, they start eating the food you eat too early in the digestion process, and the food ferments in your small intestine, creating gas that affects your digestion – primarily affecting the motility of your digestive system. This can result in anything from the runs, being backed up, or a mixture of both (yep, we’re getting real here, people!). This becomes a perpetual cycle that is very hard to break.
I should have known it was SIBO a while ago (and honestly, I did):
If you’re close to me, you’ll know I’ve been dealing with a lot of health issues for a while (2+ years).
Some of the symptoms I’ve been dealing with:
- Daily bloating (even upon waking)
- Abdominal pains and cramps (sometimes debilitating to the point I have to just lay in bed)
- Chronic constipation
- General digestive issues (regardless of what foods I eat – y’all know I’m a healthy gal!)
- Missing period since March 2017 (around the same time my extreme digestive issues started)
- Joint pain
- Frequent injuries
- General inflammation
- Water retention/swelling
- Adrenal fatigue
- Hormonal imbalances (reproductive hormones as well as neurotransmitters)
- Bad skin – skin rashes, peeling skin on face along with acne
- Hair loss
- General lack of zest for life
- Resulting anxiety, loss of confidence, sadness, etc
ALL of these symptoms make sense – if your digestion is chronically damaged, your whole body is sick! It’s stressed! It’s trying so hard to function how it should, but it just can’t keep up.
While I’ve been experiencing these, I have been to SO many doctors (and have spent so much money!) Normal doctors, naturopaths, endocrinologists, OBGYNs, etc. They could all tell me that “yes, you have hormonal imbalances”, “yes, you have no period but you don’t have PCOS”, “yes, your cortisol levels are extremely low”, “yes, you have food intolerances (that you’ve never had before)” — but until this point we haven’t known why.
I tried gaining weight to get my period back, I did elimination diets to cut out food intolerances (I’ve been GF/DF apart from the one off occasion these past 2 years), I took supplements – nothing has helped.
IN FACT… I’ve probably been making it worse this WHOLE. TIME.
Why do I say that? Well, let’s think about our current health-crazed, wellness-seeking world we live in. We live in a world with instant access to information, which don’t get me wrong, can be GREAT. However, this instant access allows for the ability for people to share information at lightning speed, whether they are qualified to share or not, and fads quickly take hold.
Think probiotics, prebiotics, fermented food – all things that have been extremely hyped up in the last few years. “WE NEED MORE GUT BACTERIA! Gut issues? PROBIOTICS! KEFFIR! KIMCHI! KOMBUCHA!”
But the thing is… someone with SIBO should NOT be feeding his/her body with MORE bacteria!! THAT IS NOT HEALTHY FOR THAT INDIVIDUAL!
But of course, without answers until now, I fell prey to trying all the probiotics, prebiotics and fermented things on the market, praying they would be the solution to my issues — I was really just fueling the fire. GOSH DARN IT!
So how did I finally find out I have SIBO?
This year I started a new job, and it has been such a blessing. My insurance through my new company is stellar, and I know I am so, so lucky. Because of this, I finally was able to see a gastroenterologist.
In my first visit with her, she felt my abdomen and noted that I did indeed have a lot of gas (like yeah, lady, I KNOW THAT’S WHY I’M HERE LOL!). She did initial blood work and an abdominal x-ray. Blood work came back normal – i.e. no gluten allergy or anything major like that. The x-ray showed that I was extremely backed up (again, knew this).
She prescribed me the cleanse that you take prior to a colonoscopy to help clear me out, and if I still didn’t feel well after this, I was to try the elimination diet again to see if it was any of the food I was eating, and then I would have a follow-up with her in April.
I completed the cleanse on a Sunday – HOLY MOLY, DON’T DO THIS UNLESS YOU HAVE TO. This was like, 3-4 days of misery for me. The cramping and discomfort eventually passed, but I was to continue taking Miralax daily. That week I felt much better, until I just didn’t again. Basically, I noticed if I skip one day of Miralax, it puts me into a tailspin again. Because of this, I reached out to her and explained the cleanse hadn’t helped and I was still miserable, and she just decided to order the SIBO test for me right away. (WAY TO BE PROACTIVE, SIS, LOVE IT.)
The test itself was simple. The prep was a little annoying, but honestly not horrible.
The purpose of the test is to test your hydrogen and methane levels in your small intestine. To get to the point, high levels of either of these gases indicates SIBO.
The day before, you are only allowed to eat plain protein, white rice, white bread, and plain coffee – SO FUN. Then, you fast for 12 hours prior to the start of your test.
The test is 3 hours long, consisting of blowing into balloons every 15 minutes after drinking a solution of lactulose.
I’ll chat more about the specifics of the test in a later post.
I had done some reading on SIBO prior to my testing (remember, I said I had suspected this a while ago), and from what I had read, I expected my methane levels to be elevated.
Sure enough, my results were posted the day after the test, and I am in fact methane dominant. My resting state measured at 58ppm and maxed out at 98ppm (for reference, anything over 10ppm is considered to be evidence of SIBO).
SO NO WONDER I HAVE BEEN IN MISERY!! IT’S NOT IN MY HEAD! – That’s the relieving part. The daunting part is taking this on…
I’ll chat more in detail about this in a later post, but generally, treatment is not simple. There is not a magic pill to fix this. This is largely because SIBO is not a primary condition, but is secondary, meaning it is caused my something else — something you have to figure out (aka MORE tests). In general, you’re looking at multiple rounds of antibiotics, supplements and diet/lifestyle changes, and praying for no relapses.
So, I mentioned I should have known it was SIBO – why do I think I have developed this? I have a few theories for me personally:
- I had either an extreme case of the flu, or more likely, food poisoning (#1 cause of SIBO), in February 2017 – right before all of my extreme symptoms started
- I’ve taken NSAIDs all my life for chronic headaches – NSAIDs are notoriously damaging to the gut lining
- I had mono in college
- I was plagued with strep throat every 3 months in college until I got my tonsils out in 2014 – so a lot of antibiotics in my life time
- I already have an autoimmune condition – Sjogren’s.
- BASICALLY I AM A BREEDING GROUND FOR THIS NONSENSE.
So, what’s next?
Well, I have my follow-up appointment with my doctor on April 5th. Until then, I’ll be doing my own research to come prepared for self-advocacy.
I have already started curating resources and completing my own research, and I’ll be updating this blog with my findings so that I can help others experiencing this! You can follow my journey on here, as well as my social media platforms, and I’ll be utilizing the hashtag: #slayingsibo
I want to hit this head on, and I’m willing to do just about anything to #slaysibo.
6 thoughts on “Slaying SIBO:”
Hi! Great blog. I love how you sound so positive about fighting sibo. Let me tell you girlfriend it is not easy. I am 14 months into to treatment. I had a few months in between where I felt great but if you don’t maintain some form of treatment (which I didn’t know) you will most likely relapse…hard. I did. You’ll come to a point where you feel like you have tried everything and the Elemental diet (which sounded crazy at first) is sounding like a good idea. That’s where I am at. Good luck to you! If your sibo is as stubborn as mine your gonna need it.
Thanks for your comment – I am TRYING to me the most positive I can be! It’s definitely been hard these last 2 years without answers, so this is at least somewhat encouraging. I know none of this is going to be easy – this is quite evident from the mere fact I’ve been suffering for long even amidst dietary and lifestyle changes! However, I’m hopeful that now with medicinal intervention, I can tackle this. Funny you mention the elemental diet, because yes it sounds crazy, but honestly, I would do it! LOL! Are you SIBO-C or D (if you don’t mind me asking!) ?
Hi Haleigh, I just started 1650mg Xifaxan, 1000mg Neomycin, and 5g Partially Hydrolyzed Guar Gum daily.
I based my request and conversations with my doctor on these studies:
Hydrogen focused study
Xifaxan alone: 62.1% hydrogen eradication
Xifaxin + Guar: 85.0% (87.1%) hydrogen eradication
Methane focused study
Xifaxan alone: 28% methane eradication
Neomycin alone: 33% methane eradication
Xifaxan + Neomycin: 87% methane eradication
Sounds like you’d want to do Xifaxan + Neomycin, and maybe add some PHGG for comprehensiveness. Good luck!
Thank you so much for this information!! Will definitely take a look at it all and talk to my doctor about it 🙂 How have you been doing so far?
It’s only been 2.5 days, so I’m sure most of this is psychosomatic, but I’ve felt amazing– like I haven’t felt in years. I’ve been waking up early with high energy, got the strength to go to the gym each day, spend the day with friends on Saturday (beautiful weather in NYC!), etc. And my stomach looks and feels flatter! But we’ll see as we finish treatment.
P.S. I don’t know who your GI is– I think I have a good, hospital-affiliated, one, but it’s clear even he doesn’t keep up with all the new research and work being done on SIBO. I would suggest coming to your next appointment armed with as many studies as you can. Although be careful bringing in blog posts (and comments like mine!) because some doctors might roll their eyes… =\
That sounds so amazing and promising!!! I hope you continue to feel amazing like you have been, and that I experience similar results! I definitely am coming armed with information for self-advocacy — I’m not trying to waste time and mess around here. I want my life back!