I have attempted to write this post at least three different times over the last few months, throwing a couple thousand words onto a page only to scrap it, unfinished. I found the subject of "What's been going on with Tana this year" to be much too broad. Until late October, I didn't even know it had a name. Now that I have been diagnosed and I've had some time to process this year, I think I'm finally ready.
Most people don't know this because I have been pretty quiet about it, but I have been sick since the beginning of February 2021. Eleven months and counting. The battle of getting to a diagnosis was long and incredibly painful, and I could write an entire book on it. Maybe I will some day, but for this post I'm going to focus on what SIBO is and what it looks like so that you, the reader, the friend, the loved one, can better understand it. This is for the people who've asked how I've been, who've wondered where I’ve been, or the people who know that I’ve been ill but don’t know the extent.
A disclaimer: I will speak largely in layman's terms. I'm not a doctor, and I'm not looking to debate medical nuance.
So what is SIBO?
SIBO stands for "small intestinal bacterial overgrowth." It is a form of dysbiosis. If you know a little about anatomy (as I barely do), you'll know it is the large intestine that contains the bulk of your "microbiome," which makes it well suited to deal with bacteria, both good and bad. The small intestine, not so much. And sometimes the "doorway" between the small and large intestine gets compromised to the point that bacteria gets stuck in the small intestine, and there it builds. And because it’s not meant to handle that kind of bacteria, it causes a whole slew of issues.
The bacteria produces two main types of gasses: hydrogen and methane, which makes for two main types of SIBO: hydrogen-dominant and methane-dominant. So when you take a breath test to diagnose SIBO, whichever gas is recorded to be stronger is the dominant type. And it can have a huge impact on what symptoms you experience and the treatment you receive. If you are methane-dominant, you tend to have more constipation and bloating, whereas hydrogen-dominant SIBO usually causes diarrhea. I, myself, am hydrogen-dominant, so that’s what I will speak on.
The other tricky thing to note about SIBO, before I get into what it feels like, is that it can be caused by any number of things, which makes diagnosing it and getting rid of it particularly challenging. A single bout of food poisoning can do it. Using antibiotics. Having IBS. High stress. Everyone has a different story. In my own case, I don’t know for certain what caused it; the running theory is a bit of food poisoning back in February, but it is possible I was showing signs of this as early as 2017. SIBO is technically treatable, but it tends to come back to haunt people, so if you don’t know what brought it on, you are at higher risk of relapsing. And even if you do know, the bacteria is a wicked foe and might come back anyway.
So what does SIBO feel like?
CN: talk of sickness, vomiting, and other unpleasant bodily functions.
Let's speak frankly: each and every one of us knows how vital a good bowel movement can be to your day. And also how a bad one can make you feel like, well, shit. Every morning since early February, I have woken up with diarrhea and/or loose stools. Typically up to five times a day. If I’m lucky maybe it will only be two or three. On a bad day, it can be more than ten. Think about the last bad stomach flu you experienced. How drained you felt. Energy depleted; the thought of food makes you feel sick; your stomach hurts; your whole GI system feels like it stepped into an MMA ring and lost.
Now imagine that feeling never going away. For months. For almost a year. SIBO sufferers often talk about “brain fog” and it’s no wonder; the dehydration alone from all of that could make someone foggy. But since the small intestine can't do its job, I can't absorb nutrients the way I should, which makes me deficient in essentials like vitamin D, B12, sodium, and several others. The body, its organs, down to my cells, aren't getting what they need to function well, and everything suffers as a result.
In addition to the frequent and uncomfortable BMs, I tend to get nausea or severe stomach cramping. Eating is a huge struggle, which brings me to the next tough part of SIBO: Diet. Because the bacteria are “fed” by certain types of food more than others, you have to be quite careful about what you eat. Now, a change in diet will not cure SIBO, but it can help lessen some of the symptoms. Some people use elemental diets, the low FODMAP diet, or the paleo diet. Low FODMAP didn’t work for me, so my naturopath suggested paleo. That means no gluten, no dairy or legumes, no starch. I was losing too much weight on a strict paleo diet, so I add in gluten free pastas and breads (rice-based) to give myself a fighting chance. I am not much of a chef. I’ve never found that love of cooking some people naturally have, but even if I did, my energy is so low most of the time, simply finding the will to make myself a proper dinner is just not in the cards. And given how strict the diet is and how sensitive my stomach, eating takeout is risky and treacherous.
I do not derive much joy from food anymore; it’s become something of a chore. A tedious and difficult obligation that never seems to make me feel good, no matter what I choose. Some days I can eat without much kickback, if I’m careful. Some days even totally safe options will still feel “stuck” in my esophagus or sit like a rock in my stomach.
Treating SIBO
In order to get rid of SIBO, you usually have to make the problem worse. Here, I can only speak on my experience because this stage looks different for each person. Most folks try a course of antibiotics to get rid of the bacteria. I did one round of Xifaxan, which had absolutely no effect while I was on it. When I’d finished the two weeks, my symptoms got worse, and it took weeks more to balance myself out again. Not to “feel better” but just stable enough to try something else. It is worth noting too that because my SIBO went on for so long without diagnosis, the bacteria had a long time to build. A single round of treatment was never going to be enough.
The worsening of symptoms is related to what is often called a “die-off.” This is where the bacteria that is attacked by the antibiotic is "killed" and removed from the small intestines (which is good) but it's still in your system, making everything feel ten times worse until it's cleared out. Die-off symptoms range in severity, depending on the person. Some feel a bad stomachache, others need hospital intervention.
If the antibiotics don't work well, a lot of people take the herbal route. This is not to suggest the kind of “take some vitamin C and let your immune system do the rest” approach; these are some seriously powerful supplements. Knowing I have a sensitive system, my naturopath suggested we try each herb one at a time, to make sure I tolerate them before adding the next one. I took Berberine for a week, and immediately felt my symptoms get worse, yet it was just below the threshold of what I could handle day to day. Then we added in the Oil of Oregano and it put me over the edge. It was like the worst stomach flu I could imagine, curled up on the bathroom floor, barely able to walk. That was Christmas Eve.
I have stopped the herbs for now to give myself a chance to regain some strength before we try again. I will have to take it slower and take it in smaller doses. That is simply what my system demands. As such, it is safe to say that this will be a very long process. I am extremely weak, I am underweight, I am tired all the time. And these are just the physical symptoms.
What most SIBO patients have to grapple with in addition to all that gross stuff is a major spike in depression and anxiety. Because remember: most of your serotonin is made in the gut, so when the gut can't function, your mental health will likely suffer. I look back on this year and how long this battle has been, how long it will be, and it is crushing at times. Sometimes having hope feels foolish, even dangerous. Six months ago, I dreaded the thought, “What if I’m not even better by the new year?” The new year is upon us, and I’ve stopped making guesses like that.
There are some days where my biggest struggle isn’t the nausea or the fatigue, it’s trying to tell myself that this will end, that one day I will feel normal, that I will be able to eat freely and enjoy my life, I’ll get to go places without strain, make plans in advance, travel, share a meal with a friend, enjoy a glass of wine. The one year mark is fast approaching, and the longer this goes on the harder it is to convince myself that those things will happen, and I won’t be stuck in this hell forever. I am lucky to have such a rock-solid support system around me; they keep me afloat even on my darkest days.
The Takeaway
I’m not writing all this because I want sympathy. I avoided posting anything about SIBO or what I’ve been going through largely because I am a private person and the details aren't exactly what you like to bring up in "polite" company. I also didn't want a tidal wave of “get well soon” messages, or worse, people asking "are you better now?" It is a kind gesture, but it doesn’t help me out because I'm not better, and I won’t be getting well any time soon. That’s not defeatist, it’s just the reality, and to con myself into thinking otherwise would only be harmful to my mental health.
I don’t need people to feel bad for me. What I want, why I’m writing this, is to raise awareness. The greatest challenge of SIBO is no one knows what it is, even a great number of doctors, and it’s not something I can succinctly explain. You can’t imagine all the things I’ve left out. So consider this a resource, both for what SIBO can look like, and what chronic illness can look like. Yes, I’m paler than usual, I’m thin as a rake, but you can’t always tell by looking at me just how bad I feel or for how long.
There is a story that goes around when chronic illness comes up called the Spoon Theory. You can read the original story here but in essence, it is this: those with chronic illness only have so many "spoons" each day, which represent your energy, and each small task you have to perform requires one or several spoons. Taking a shower might require three spoons. Going to the store might demand four or five. Another spoon lost making lunch for yourself. A few just for getting out of bed. These basic tasks add up, and at a certain point you have to choose which thing you can accomplish because you cannot do it all. Maybe the laundry needs to get done, but you don’t have enough spoons to do that and make dinner, so you must choose, or “borrow” spoons from tomorrow to push yourself today, knowing it will make the next day worse. It’s a quirky little metaphor, but I’ve found it is effective in communicating to loved ones the kind of day I’m having.
If you have made it this far, then let me thank you. I know it isn’t an easy thing to read. It wasn't an easy thing to write. I don't want you to rush to comfort me; I do not need consoling. I merely hope to expand your awareness. Maybe to remind you that you never know what a person is dealing with. And certainly to remind us all how precious our health is. In this time of COVID, I think there is more reason than ever to be cautious, and I know better than anyone how much of a drag it is to isolate for months, even years at a time, wishing the world was different and that it was safe. But it’s not worth getting sick.
So if you are healthy, treasure that health. Eat an indulgent meal and savor it to the last. Enjoy that glass of wine with friends or family. If you wake up and feel great, rested, or at least feel human, be thankful for that. It is those small things that I miss most.
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