After being diagnosed with small intestine bacterial overgrowth (SIBO), I gained a new perspective on what it means to live with an invisible illness.
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Q has been living with type 1 diabetes for over ten years now. In that time I’ve learned to be an advocate for her to make sure she gets what she needs to meet her medical needs, to be safe at school, and to participate in extracurricular activities.
But in those ten years, I have to admit that I haven’t always put myself first — not just because of diabetes, but because I am a mom — or taking care of myself to the best of my ability.
I often found myself in a vicious circle of not feeling well because I was overweight and exhausted and being overweight and exhausted because I wasn’t feeling well. I’ve dealt with chronic pain for years and years. I’m sure I would have felt better if I could have lost a little weight, but it’s hard to lose weight when you are in too much pain to be active.
I finally got to a place of self-care and found a trifecta that was really working for me both mentally and physically: twice weekly yoga, regular chiropractic adjustments, and monthly massage.
Of course, when I started feeling better on so many levels, the other shoe dropped. My shoulder began aching and the pain intensified to the point that I could no longer do downward dogs or any yoga pose that used my shoulder or arm. I had what I would find out was impingement syndrome: reaching for something at or above arm height would give me a searing pain. Unproductive physical therapy, many x-rays and doctor visits, and an MRI later it was determined that I had a bone spur in my shoulder and required surgery.
Of course.
The surgery was successful, and I recovered much more quickly than I anticipated. I used acetaminophen instead of the heavy duty narcotics prescribed to me. I was a warrior when it came to my exercises, which I did three times each day religiously. But not being able to drive or go to work for three weeks was really a downer. A few months after the surgery my shoulder began freezing up, and I went to a massage therapist who worked it so deeply that it was almost unbearable, but it worked.
Around the same time as the surgery, I started noticing, um, “symptoms.”
(And you are totally free to click away because the following definitely falls under the TMI category.)
I had always had very regular bowel movements. Every single morning. Like clockwork.
And then I began going several times a day. I would often have to go urgently. Like “run to the bathroom right this minute and almost not make it” urgent. I would have diarrhea an hour or two after eating. I had so much stomach gas that I looked like I was eight months pregnant.
I was miserable.
I saw the nurse practitioner who ordered a bunch of lab tests, referred me to a dietician, and suggested I begin a low FODMAP elimination diet to try to figure out if there was a trigger.
Let me just tell you that the low FODMAP diet S-U-C-K-S when you first begin it because almost every single food in your pantry and fridge has an ingredient that is off limits.
I was so sad. So, so sad.
Just the act of feeding myself became incredibly complicated, time-consuming, and expensive.
Seriously, why are gluten-free foods so incredibly expensive?! Because they can be, that’s why!
It took several months to get in to see a gastroenterologist. She scheduled a colonoscopy and endoscopy. And then I got “real people sick” and had to reschedule it, which set me back another few months.
I had the worst pain I’ve had in my entire life. It started with a backache. I could not get comfortable, and I couldn’t sleep well. On day three I had the worst stomach ache of my life. On a pain scale of one to ten, I was an eleven. I went to the ER and was diagnosed with pancreatitis. I was in the hospital for three days! It was horrible.
The “soft diet” that I had to eat while I recovered was not low FODMAP, and it derailed those efforts.
And then the doctor I had been seeing left the practice, and I went to a different gastroenterologist who suggested testing for SIBO and lactose intolerance, which would be followed by a colonoscopy and endoscopy if those were negative.
I tested positive for SIBO. What the heck is SIBO, you ask? It’s small intestine bacterial overgrowth. Say that five times fast!
Basically, the good bacteria in the large intestine takes up residence in the small intestine where it shouldn’t be. The bacteria feasts on your food causing constipation in some, diarrhea in others, and crazy bloating in most.
After an entire year of feeling horrible, I finally had an answer. Unfortunately, it wasn’t a simple fix.
I was prescribed xifaxin, which is the first line of treatment for SIBO because it only works on the bacteria in the small intestine. (There are also herbal antibiotics that work for some people.) My insurance denied the xifaxin because it cost $956. For twenty pills. I’m not even kidding. The pharmacist was able to apply some coupons and fill it in multiples of 6, and it ended up costing me $40. But I was told that the coupons could only be used once per year and forget about a second round, which many people need.
Many, many people can’t afford xifaxin. Sound familiar?
I was also instructed to return to the low FODMAP elimination diet, which I have been doing for over a month and am now at the point where I can begin “challenging” categories of trigger foods.
That’s brings the backstory up to the present.
I was feeling sorry for myself the other day, ate a few meals that I shouldn’t have, confessed my “sins” to a SIBO support group, and realized that SIBO and type 1 diabetes have so many similarities even though they are completely different beasts.
April is IBS awareness month, and Kate Scarlatta — the go-to American resource for all things IBS, SIBO, and FODMAP — has a campaign called #IBelieveInYourStory. Just like type 1 diabetes, what I am dealing with is an “invisible illness.”
I share what I’ve been going through this past year, not as a “whoa is me” story to garner sympathy, but because it has definitely strengthened and even shaped my perspective.
In the coming weeks, I hope that you will return here as I talk about the social, emotional, and physical effects of having a chronic medical condition, which I now realize is shared broadly by people dealing with a large number of invisible illnesses.
I’m so sorry to hear about your challenging journey!! Thank you so much for sharing about it. I have IBS and the low FOPMAP diet has been suggested but I’ve never gotten to the point of pursuing it. In early adulthood and for years thereafter, my gut has rejected a surprisingly long list of foods. All is well if I avoid them. But we ones develop every 1 – 2 years. It started with lactose intolerance at age 5 and then egg intolerance at age 8 and then jumped to adulthood with bell peppers, broccoli (but not cauliflower or tomatoes), zucchini, summer squash, quinoa, uncooked onion, strawberries, bananas, cantaloupe (and probably a few more that I’m forgetting). Upper abdominal pain and nausea and a gut that hurts for at least a day after that trauma. Allergist, gastroenterologist, no answers except the generic IBS. I’d try alternatives but M.D. hubby isn’t so keen on spending money on un-proven treatments. Anyway, I’m glad you have answers and are on a path to healing. Price of that medication is jaw dropping—and yes it is a familiar story to T1D. Best wishes to you!