Shame and ignorance must not prevent people from finding help with stomach pain and SIBO.
I’ve gotten used to the patter. I smile nervously, make a joke, apologize for the number that’s about to show up on the scale at the doctor’s office. The nurse records my weight, 82 pounds, and I get the eyebrow. My stomach lurches. I explain and explain and explain.
“I’ve had some traumatic surgeries this I
year; I’ve been under a lot of stress...” I trail off as the cortisol flows.
The truth is, I don’t have any idea why I am losing weight, why my hair's falling out, why I find myself struggling to stay awake by mid-morning.
That is, in fact, why I am here. Still, my weight puts me on trial; the nurse is my judge and jury. The fluorescent light, the exam room table’s crinkly paper, the squeezing of the blood pressure cuff: these things register piercingly. Blood pressure’s high too. Heart rate’s high. The nurse’s eyebrow goes up. I smile; she says nothing.
“The doctor will be in soon,” she offers, after recording my stats.
The door clicks, then — silence. I avoid shifting on the table, afraid to breathe, afraid to move, afraid to be me.
Dr. P. ushers me into her office. I sit on her couch, and she looks me in the eye — something I am no longer accustomed to in doctors, who are forever recording things in computers. I sometimes wonder if my doctors could pick me out of a line-up.
“Have you heard of SIBO?” she asks.
I think about how casually I took for granted my good health and how somehow now it has escaped me. I think about the stress of my daily life, the irregularity of my days and the myriad emotional stresses that invade my mind while I am at work.
Dr. P’s specialty is “integrative wellness,” meaning that she attempts to look at all the body systems at once and to treat the whole person, not just the area of the body that is behaving pathologically. I’m suspicious, and I don’t expect her to have answers; the others haven’t — not the hematologist, the internist, the rheumatologist, or the G.I. specialist. But Dr. P. has an unusual calm about her — she is not trying to rush me out the door. Still, I am wary; do I even want to know what SIBO is? It sounds scary. With an almost imperceptible shake of my head, I tell Dr. P. I have not heard of it.
“Small Intestine Bacterial Overgrowth. You said you were feeling sick all the time; you can’t digest FODMAPS, your intestines are at a standstill. You’ve never had a hydrogen breath test?”
Nope.
“How long have you been anemic?”
“Years.”
“What can you eat?”
“A little fish, a few nuts, sometimes tomatoes. A few other things here and there.”
“And how much weight have you lost?”
“About ten pounds.”
A breath test does confirm SIBO: I have an abundance of bacteria colonizing my small intestine, which is supposed to be a sterile area of the body. This overgrowth is most likely due to years of antibiotics for UTIs, strep, ear infections, and the like, without the prescription of probiotics to stem the tide of bacterial disruption that inevitably occurs when antibiotics are ingested.
What now?
SIBO is a wide-spread and under-diagnosed condition; many people who are diagnosed with Irritable Bowel Syndrome are in fact are suffering from SIBO. I learn that most people do not recover quickly. First, a two-week period of an antibiotic is prescribed. This antibiotic does not leave the intestines, making it a less risky medication. The downside? It seems to be effective in only 30% of SIBO sufferers when used alone. Many patients require more powerful antibiotics to kill off the overgrowth.
Indeed, my constipation and pain do not dissipate much while on the first antibiotic (for some SIBO sufferers it does), and additionally, I suffer the symptoms of “die-off.” When bacteria are dying in the intestine, it can release toxins into the bloodstream. This can cause headaches, exhaustion, stomach pain, and a dizzying mental fog. I grope through my days, catching ten minutes naps when I can, picking up my daughter at school as though nothing is wrong even as I feel waves of nausea and keep misplacing my keys and forgetting daily tasks.
After my two week course of Rifaximin, I send an e-mail to a nutritionist who works in my G.I. doctor’s office. “What now? I am sicker than ever! My intestines don’t work. Red light!”
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I am now using Dulcolax and simethicone, desperate for relief. I am pale and sweaty, worn from ingesting little food and poorly digesting what I do manage to eat. It is hard to find clothing that fits properly; I am in sweatpants more than I would like to be; I pile on extra blush to hide the exhaustion, the waxy pallor of my skin.
I head back to Dr. P. for a follow-up. I tell her that although I am not anorexic in the sense of wanting to lose weight, I have come to fear food. Everything now hurts my tender stomach. Nothing flows through my beleaguered intestines. I am nauseated and thinking poorly. She tells me to add another probiotic to the one I am already taking, and to add three pills at night — herbal medication designed to improve digestion and “heal the gut.” I am to add Magnesium Citrate to hot water and drink it at night. She also adds fresh ginger tea to my regimen, to be sipped at least twice a day. She tells me to avoid drinking lots of water with meals; it reduces the acidity of the stomach, she says, and that weakens the stomach’s ability to digest food. I’m to drink just warm tea, and only a little, with dinner. All beverages should be warm, she says, as this increases blood flow to the gut. My Amazon cart fills up quickly: I must ingest as much coconut and olive oil as possible and replace butter with ghee.
I must also reduce stress, which sounds like a comic impossibility.
Finally, I must massage myself with Almond Oil every night. Dr. P tells me I am a Vata type: always cold, with very dry skin, extremely thin, and subject to digestive problems, particularly in times of stress. I can hardly argue with this description. She smiles at me as I leave the office, telling me I should write affirmations daily: “I am already healing. I am gaining weight. I am digesting food.” Tears roll down my cheeks as I try to smile back. I think of the hilarious irony that we must reduce stress when we are feeling unwell, of the circular reinforcements of negative thinking and fear that illness bestows, and, pulling up my jeans, which are falling past my waistline, I make my way to the bus that will take me home.
I go down my list of pills and potions and creams and advice. I place my Amazon order. I wait. I think about my little child, who like clockwork goes to the bathroom each night around five. I think about her hours of play after school, the fresh air she inhales and the routine consistency of her days. I think about the years of antibiotics that were carelessly, relentlessly thrown at me when I developed a swelling of the bladder known as Interstitial Cystitis I think about how casually I took for granted my good health and how somehow now it has escaped me. I think about the stress of my daily life, the irregularity of my days and the myriad emotional stresses that invade my mind while I am at work. I think about what good health means, and how we define ourselves, and what we consider weakness and to what extent we can accept that luck plays a large role in our lives. It is what we do in the face of bad luck, I remind myself, as I watch my child swing from the monkey bars, that defines us.
I determine that above all else, I want my child to learn that her body is something to be cared for and that life is as much about releasing yourself from anxiety when things go wrong — as they inevitably will — as it is about accomplishing things.
I wish I could keep her in the carefree state she seems to exist in as she swings from one monkey bar to the next, but I know that life will pose great challenges to her serenity. I think about how I can impart the lessons of my ill health, how even though sickness is not anyone’s fault, we can still exert some control over our healing process.
I am taking my expensive regimen of probiotics and digestive aids, slathering the few vegetables I can digest in coconut oil stir-fries, swallowing digestive enzymes with every meal, so that my stomach might absorb a few nutrients. I notice that the supplements have begun to work; I have been able to move away from the jarring laxatives, and the slow process of retraining my intestines has begun.
I let myself cry if I can, I try to remember to exhale, to stay away from my cell phone, to read books instead of the headlines every day. Doctor’s orders: I must reduce stress.
I wonder how many people are affected by SIBO. The more I hit Google, the more I see it is a problem that people are increasingly willing to talk about and doctors are learning more about. There is even a SIBO clinic at Cedars-Sinai, one of the most prominent hospitals in the country. I’ve been symptomatic for at least three years, turning up with low levels of iron that required multiple infusions, and dangerously low levels of magnesium. For years doctors told me to increase my Vitamin D, my magnesium, to swallow constipating iron pills, to cook from cast-iron pots — but if your stomach doesn’t work, you can eat iron all day, and it will not stem the tide of anemia. No one ever mentioned SIBO. The condition is only now coming out of the shadows and gaining the awareness it merits.
Shame and ignorance must not prevent people from finding help with stomach pain.
For too long I avoided dealing with my pain because bowel pathology was terribly embarrassing. I had to reach a point of despair and great malfunction before deciding to find answers. Advocacy is key; had I not knocked on many doors, enduring the indignity of endlessly repeating symptoms that affected the most private parts of my body, I would never have been diagnosed.
If your stomach hurts, listen to it. If you feel unwell and tired, if a mental fog has descended and food is a battle instead of pleasure, seek help. Ask about having a breath test, explore your history with antibiotics and the other risk factors for SIBO. Take care of yourself, above all else. Right now, I must repeat daily the simple task of exhaling and telling myself I am worthy of the protocols and checklists; I am worthy of closing my bedroom door for ten minutes while my child plays alone so that I can close my eyes or drink some ginger tea.
I was raised a skeptic; I am new to the idea of affirmations. I feel silly trying to reassure myself with mere words. I have long undervalued the power of feeling good about myself or worthy of care, and I have a lifetime of being hard on myself to make up for. Somehow, I have had time for caring my child, paying the bills, cleaning house, scanning recipes, doing laundry — but I am only now making time to tend to my own body. It isn’t easy — I often want to give up, but I know that there is no turning back. For the sake of my family, for the sake of my one precious life, I will stay on this path. So, pass the coconut oil and the ginger tea, my gut and my heart need healing.
