I’ve spent the last several years thinking, “once I get a diagnosis, I’ll finally be able to start living a normal life.” After all of this time, I don’t even know what “normal” is anymore.
Maybe “normal” is being able to eat foods without having a panic attack that what I’m about to put in my mouth will cause me a flare that’ll last for three days (or longer)
Maybe “normal” is being able to hangout with friends and family without a change of clothes and a pharmacy of medications in my purse for when (never if) I get sick.
Maybe I don’t know what “normal” looks like in my future, because I’ve constantly had to adapt my definition of it with each and every new diagnosis.
I get asked quite often exactly what is wrong with my insides. The short version is A LOT; the longer version includes diagnoses like: IBS c/d (irritable bowel with constipation & diarrhea), gastroparesis (when the stomach takes an inordinate amount of time to empty), leaky gut (when bacteria and/or toxins leak through the intestinal wall), acid reflux (when stomach acid flows up from your stomach into your chest and/or mouth), a defunct small intestine, chronic vomiting, incessant nausea . . . and now SIBO (small intestinal bacterial overgrowth).
Basically I’m a GI (gastrointestinal) specialist’s least favorite kind of patient, because I have all so many things wrong with my upper AND lower intestines. Every time one thing is fixed, something else goes wrong.
Sometimes it’s hard to remember that I haven’t always had health issues. In college, I was pretty healthy and very active. I went to the gym almost every day. I could eat anything and everything. I kept up with school, work, and volunteering without batting an eye.
Fast-forward a few years, and my new “normal” has become daily bouts of vomit, diarrhea, headaches, fatigue, nausea . . . the list goes on. I got so sick a few years ago that I had to take a medical leave of absence from law school (see this post) because I couldn’t physically sit in a classroom for more than fifteen minutes without getting sick. Over the years, I’ve developed a gaggle of anxieties related to being chronically ill, like worrying about aspirating on food at a restaurant or having a lower GI flare in public. Without exaggeration, these last few years have been pretty shitty (that’s a GI joke, in case you missed it).
So, without further adieu, let’s talk about my latest and greatest diagnosis: SIBO!
WHAT IS SIBO?
It’s short for “small intestinal bacterial overgrowth,” which essentially means I have too much (and/or the wrong kind) of bacteria in my small intestine. There are two kinds of SIBO: hydrogen-dominant and methane-dominant. The two kinds of distinguished by symptoms: hydrogen-dominant usually causes more diarrhea, while methane-dominant is usually more constipation. Some patients, like myself, have both, and it just depends on the day which is more dominant.
In order to determine whether or not you have SIBO, a doctor can order a procedure called a “breath test” which measures the levels of each gas in the body. I’ll talk more about the test itself in a separate post, but for now, just know it’s non-invasive test, so there aren’t any needles or anesthesia required.
In a healthy body, food is usually broken down and digested into the bloodstream through the wall of the small intestine. In a hydrogen-dominant SIBO patient, the body has bacteria that ferments food, instead of digesting it, causing hydrogen gas to form.
The other kind of SIBO happens when archaea, a single-celled microorganism, feeds off this hydrogen and produces methane. One one hand, it’s great that the archaea reduces the amount of hydrogen gas in the body, but a buildup of methane isn’t a good thing. Methane buildups can lead to health issues like constipation and obesity (because it can lead to higher production and absorption of short-chain fatty acids). Neither kind of SIBO is good, but apparently hydrogen-dominant SIBO is easier to treat with antibiotics. Of course, I tested positive for methane-dominant SIBO (so it’s more resistant to medication and has a higher likelihood of reoccurrence).
HOW DO YOU CURE IT?
Medication alone isn’t enough to treat either kind of SIBO. Since this diagnosis, I’ve had to completely overhaul my diet, including: cutting out gluten and ALL high-fodmap foods (RIP garlic, onions, maple syrup, corn, potatoes, avocado, watermelon, among many other things). The diet alone has been quite a steep learning curve; definitely something to cover in a separate post.
Circling back to the medication, there are a variety of antibiotic treatments a doctor can prescribe. For this first round of treatment, I’m on Xifaxan and Neomycin. In the words of my doctor, these medications “wipe out all of the bad bacteria in (my) stomach, but because it’s hard to differentiate between different types of bacteria, (I’ll) lose good bacteria, too).
My first day on the medication, I really hadn’t prepared for how much I had to change, so I ate things I wasn’t supposed to, like bread, potatoes, garlic, and a ripe banana. The first two weeks on the medication, I’ve been told it’s the most important time to cut out foods that feed the bacteria in my small intestine, so I’ve stocked up on all kinds of low-fodmap and gluten-free eats.
As with everything on the internet, this isn’t advice about what to do/not do for your own health. I actually got the idea to ask my doctor about getting tested for SIBO test from Blair Flynn (@balancewithb), another blogger who creates rad recipes and has documented her digestive health journey. I’d done every other GI test under the sun (colonoscopy, endoscopy, smart pill, digestion studies, motility study, diet modifications, medications, etc.) and nothing had really worked. I figured it was a shot in the dark until I took the test and it came back positive.
I should also note that medication isn’t the only way to treat SIBO. There are holistic, diet, and other changes people try before and/or instead of the pharmaceutical route.
A lot of patients opt out of the treatment I’m taking because the side effects are super gnarly. That, and there isn’t a guarantee that one treatment will “cure” SIBO.
My doctor’s nurse called me when I first got my test results to warn me that, not only is the medication SUPER expensive without insurance or other coverage (like thousands of dollars expensive for two weeks of pills), but the physical effects of the pills can be REALLY bad. Like, hide your children, hide your wives . . .or just be like me and hide from the world for a few weeks, because you’re going to feel like absolute shit.
Well, it’s been a few days and I can confirm that this treatment is no joke. My ears have been popping nonstop, the diarrhea comes within fifteen minutes of me taking a single dose, and the overwhelming bouts of nausea are like a college hangover on steroids. Apparently permanent hearing loss is a frequent side effect of one of the medications, even when taken as prescribed . . . so that’s fun. Some other potential side effects: mood change, drowsiness, weight gain, and shortness of breath.
Another drawback to being on these meds is not being able to take PPIs (proton pump inhibitors). I’ve been on one for quite some time to help with my upper GI symptoms like reflux and stomach acid from vomiting.
LONG-TERM CHANGES
Prior to this diagnosis, I’d never really been one to read labels on things I’m putting into my mouth. I mean, I knew what foods triggered my flares (more or less), but if it was mixed in with something else, I usually just picked it off or ate it and hoped for the best.
Now, that’s not really an option.
For the next couple weeks I’ll probably (no, definitely) be a social recluse. My diet’s super limited (like, can’t eat out at a restaurant because I don’t know what they cook their food in and I might get sick, limited). That and I’m in and out of the bathroom every hour on the hour, so I can’t really go anywhere. The ultimate staycation, really.
Well, now that I’ve overwhelmed y’all with details, that’s all I’ve got. Some of it was probably TMI, but ya know what? I started this blog because I didn’t really have a resource to look to when I got sick, and now that I’m starting to get into the thick of dealing with these GI issues, maybe someone will read this like I read one of Blair’s posts and be proactive about getting help.
That’s all for now. My first dose of the day is starting to kick in!
xx,
2LWithIt
How are you doing now? I truly think SIBO is BS at this point. Most people relapse because it isn’t root cause and staving and killing bacteria depletes the microbiome diversity and worsens dysbiosis. I was so much better off before Lowfodmap diet and multiple treatments. A high fiber plant based diet full of fodmaps is helping me slowly but GI and immune system is drastically worse after following GI doc and ND treatment plans for SIBO. I had microbiome testing done and my bifado bacteria is now depleted and I have an overgrowth of bacteroides fragilis. There is research that show Lowfodmap causes this exact imbalance. I have almost non existent levels of other bacteria too. Lowfodmap worked for a while to mask symptoms, until it made me worse. Rifaxamin and neomycin made me worse too the last time.
Oh man, I feel ya on all that. When I was first diagnosed, lowfodmap helped mitigate a lot of the bad side effects I was having with those medications . . . but I definitely shifted my diet away from that protocol after 6-12 months. I still like some lowfodmap swaps, like Fody Foods has some good sauces and condiments. I ended up finding out I got SIBO as a side effect of some proton pump inhibitors I was on for several years that pretty much destroyed my gut, so yep, SIBO wasn’t the root cause. I did many of those tests as well, including the microbiome, and same thing, super depleted levels of all kinds of good bacteria . . . but it’s not totally hopeless, you can build it back up, it just takes a bit of time. The best advice I could share would be trust your body and what does/doesn’t feel right. These days I’m doing much better than I was when I wrote this post two years ago, but chronic living is kind of like whack a mole . . . you fix one issue and another one inevitably pops up. That’s awesome that you’re doing both western and eastern routes to address it. I hope you’re able to find some relief and treatments that work for you! xx