Why Is There No Cure for IBS?

Despite the rise in gut health awareness, treatments for IBS have barely changed in decades

You probably know the drill: you see a new doctor and have to answer a long checklist about your condition. For me, it’s a new gastroenterologist, and the long history bit is exhausting. Yes, I have flare ups — yes, they are painful. I suffer from IBS-C, which is slightly more polite than saying “irritable bowel syndrome with constipation.” Embarrassing, right?

Essentially, my digestive system goes paralytic. It just…stops. But of course, bacteria don’t stop; they continue doing the work of digesting things and creating byproducts that take up space. A lot of space. And frankly, you can’t just knock out a wall in your intestines and put up a car park.

The result is pain. Not a tummy ache pain, but rather a “I think someone impaled me from behind with a whale harpoon and is now yanking it back out, barbs, belly-button and all” kind of pain. A bad flare leaves me unable to walk. So naturally I try to avoid bad flares.

“Tell me what you do when these occur,” the doctor asks. I blink at him.

“Wait? Pray?”

“I mean what do you do to treat it.”

“I thought there wasn’t really a treatment,” I say, hoping for a minute that I have missed something obvious. He shrugs. Well, true, there isn’t. Apparently he was asking me hoping he had missed something obvious.

The truth is, there are “options” for treating my condition. But they aren’t “medical” options. I’ll run down the list, in case you have the same condition:

I gave up FODMAPS, or fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. There are short chain carbohydrates and they aren’t well absorbed in the small intestine. That’s a lot of different foods, by the way, from broccoli to apples to onions and gluten. It’s usually easier for me to tell people what I can eat than to review what I can’t. I re-engineered my entire diet, and don’t eat out much as a result.

I also went on several elimination diets. I gave up any foods that seemed likely to cause inflammation, ate ridiculously small meals to give my body a chance to break things down slowly. To help, I took Atrantil, which is horse chestnut and some other herbs in blend, along with berberine, a compound found in barberry. I also take cat’s claw tincture, ginger and turmeric for bloating, and have tried aloe juice and even chlorophyll in an attempt to hydrate my system and invite a better flow of oxygen. And at night, it’s high doses of magnesium and slippery elm to try and ensure there is enough water in the colon. Big fun. I feel like a food and herb scientist at this point.

Curiously, though my doctor(s) all support diet changes, most of them have turned their nose up at any herbal or holistic approaches. Yoga, exercise — yes, they say, why not? Acupuncture, though? Meditation? Cat’s claw? Hmm, no need to hear about that “stuff” because, well, that is not medicine. One doctor did suggest I take antacids and keep up with magnesium “if it helped.”

My experience isn’t unique. Many patients who have sought treatment for SIBO (small intestinal bacterial overgrowth) have faced disinterest and even amusement from physicians who considered it a bunch of “hokum.”

Why does that matter? Well, your small intestine shouldn’t have bacteria (because food is sterilized in the stomach) — and it isn’t at all prepared to deal with it. Bloating and pain can result. But patients like me tend to be given the usual course of repeated antacids and other drugs, which can actually make overgrowth worse. Some doctors are now wondering if IBS might be caused by SIBO, or perhaps mimic it.

So is this just the same old debate between medicine and alternative therapy? Are doctors refusing to treat digestive complaints like IBS-C (and Crohns, from which my mother suffers) out of mistrust in better cures? The answer is no, not really. Gastroenterologists want to work with their patients as best they can, whatever that means; they want to help! But when it comes to digestion, there are some tricky factors involved.

For one thing, it’s next to impossible to get a diagnosis. Speaking to The Spectrum, Dr. Todd Garrett (Cedar City) explained that “Unlike diabetes or high blood pressure or something that you can run a blood test and get a diagnosis […] there’s just no specific test or measurement that says, ‘this is IBS.’”

The other problem? Triggers. Every person is going to be triggered by something different, stress will be a factor, and once the flare begins it’s really difficult to shut it down. You can be given anti-diarrhea or anti-constipation drugs, but in the end: there are few treatments and there is no cure.

At least no cure yet. So, I conclude my meeting with the doctor, who has ordered two scopes (why not? A little summer fun for all) and told me to “stick with what I’m doing.” But standing here, at the digestive dead end, I can’t say it’s much comfort. Doing all the things right won’t mean you don’t have bad days (or weeks or months). Trigger hunting is exhausting and you can easily fall into self-blame: “What did I eat THIS time??”

It can be lonely on this side of the street. Hard to get excited about dinner dates, hard to look forward to food at all. It’s frustrating, too, and it often feels like there aren’t any answers. But I have found three things that help.

First, read a lot; not just the science but also forums where others talk about their experiences. Second, get a good cookbook. It helped me feel like at least I was taking charge of something. And I have become really good at sauces, replicating things I thought I’d never taste again. Third, recognize that sometimes, despite your best efforts, you will be sick. This is chronic, and lifelong, and not your fault.

There will also be good days. There can even be periods of remission. And I’ve personally found some help from SSRI (which aid in blocking stomach pain signals and help with IBS-C in particular), but that’s a conversation to have with your doctor. In the end, though, it will mean bringing all the therapies to bear, because when it comes to digestion, medicine does not have all the answers.

Author/Editor. Writing about history, science, & medicine for Scientific American, Undark, Globe and Mail, and more. brandyschillace.com. Twitter:@bschillace

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