IBS, the Shape-Shifting Malady

Living with IBS, or Irritable Bowel Syndrome, is never easy. But one issue that makes it particularly challenging is its morphing symptoms, which not only make it tough to diagnose but allows it to be mistaken for more serious problems.

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When I was a child few had ever heard of it. IBS, what was that? While the term Irritable Bowel Syndrome was first used way back in 1944, it was pretty obscure in common company until the late 1970s. The first formal diagnostic criteria were established in 1978. By that point my mother was already joking that she had done the right thing by naming me John.

I always had to run to the bathroom after eating dinner when I was a kid. As time went on, the episodes became more urgent. Still, and it’s odd to realize this after all these years, my parents never thought something odd might be up. I just needed to be near bathrooms a lot. We did notice it happened with saucy foods…spaghetti in tomato sauce was a big trigger. Dishes like roast chicken or broiled fish were not a problem.

As I got older those became triggers too. Eventually anything I ate “had consequences.” But I still never suspected anything unusual was “wrong” with me. And then things changed. I began to feel a tightness on my left side. Vague waves of weakness would wash over me from time to time—very hard to define or pinpoint, but I just didn’t feel right. This terrified me. My mother had died some years earlier from pancreatic cancer. As is usual with that horrible condition, she didn’t feel any real symptoms until it had reached stage four. Because of that, it was exactly two months to the day from diagnosis to death. And one of her symptoms was a dull pain in the left side. She would sit on the couch and lean to the right in an odd way to alleviate the pain. I caught myself one day doing exactly the same thing. The bottom of my stomach dropped out.

Did I have cancer too?

I had reason to suspect it ran in my family on my mother’s side, although heavy rates of smoking and diets that by today’s standards were unhealthy surely didn’t help them. But I was not diagnosed with any sort of cancer—thank heavens! I had IBS. I had a colonoscopy to be safe (since Inflammatory Bowel Disease—IBD—has close symptoms, and is far more serious) and it came up clear. “I don’t want to see you again for ten years,” were the best words I could have heard from my gastroenterologist. But for all my relief I was still left with a condition that, while not detrimental to my physical health on its own, had no cure, no real treatments and was often extremely debilitating.

The conventional wisdom for IBS sufferers is “Figure out what foods trigger it and remove them from your diet.” Ha ha. There are no specific foods that trigger mine. I’ve tried every diet under the sun. My attacks are pretty random and I’ve had IBS so long now that pretty much everything out there has triggered it at one time or another.

Like many Facebook relationships, IBS is complicated. Not only do the foods that trigger it change, but so do the symptoms it causes, and more than once I’ve gone to urgent care thinking I had some new dreaded condition, only for the doctors to conclude, after a battery of intensive and expensive tests, that my IBS had simply changed symptoms, from gas pains to blood in stools, from diarrhea to excruciating cramps after eating, from aches on one side to nerve twinges on the other. The dull pain in my left side has moved around many times. For a while I had it on my upper left, lower left, upper right and lower right, or the four corners as I called it. These areas are where the large intestine does a near 90-degree bend in the body. Those spots seem to feel extra stress or tenderness.

Then the "four corners" pain vanished. I began to feel bloated all over, in my joints. My eyeballs burned. I was tired. I Most of all, and this is very difficult to describe from someone who’s never experienced it, I felt “wrong” inside my own body. Every movement, every breath, felt uncomfortable. It affected my mood; I became morose and depressed. A primary care doctor from a while ago told me some of her other IBS patients expressed the same feelings. There really aren’t words for how this feels, so trying to make a physician understand can be difficult. Not to mention an employer, friend or spouse.

Most recently I’ve gotten muscular aches, a sort of mild burning sensation in my toes, and tender skin. Along with these sensations come spasms and cramping in my toes and occasionally, fingers and hands. Again these symptoms could signal something far more serious. Again a battery of tests. Again, all was negative. And I notice these symptoms only happen when I’m also experiencing bloating, loss of appetite, and belching. Oh, there’s suddenly lots of belching, something I never had till recently.

I’m not a medical professional but I have a few theories about IBS. I think it may actually be several different diseases. They’re related, but not everybody has the same kind. Some people report they can eliminate a food or food group to solve the problem. (I know one woman who simply became a vegetarian.) Some people, like me, have symptoms that morph. Others don’t.

Only fairly recently have some researchers speculated on a link to the nervous system. I completely agree with this. For me, the symptoms as of late are more about muscles and nerves and less about digestion and gut. And recent research has found links between IBS and fibromyalgia. As Dr. Lin Chang of the Oppenheimer Center for Neurobiology of Stress, states, “In general, it is likely that they coexist for years, but they can flare at the same time or at different times.” An article on WedMD states: “With both conditions, you have more brain activity in the parts that process pain. Your sense of pain can be enhanced.”

I can vouch for that. When I am dealing with IBS, even what I know to be minor aches and pains can floor me. There are times I want to stay in bed for days. I know on the “pain scale” I’m not that uncomfortable. Toothaches, earaches, stubbing my toe—these have all caused greater levels of pain. But somehow this pain is more raw, more primal. Over-the-counter NSAID medications do little if anything.

The National Institutes of Health states that IBS is also associated with common extra intestinal comorbidities, including anxiety, depression, somatisation, insomnia, chronic fatigue and psychological disorders. Interestingly, I know someone who for years suffered from Chronic Fatigue Syndrome, but she never mentioned IBS. I can raise my own hand for the anxiety diagnosis, however.

I also have a hyper-sensitive temperament: I feel like my “clock” is set faster than that of most people: I talk fast, think fast, type fast, become impatient or bored faster than most people. I often feel like the world around me is going in slow motion. In a setting where a joke is told, I laugh before everyone else "gets it." If I’m watching a horror movie, I jump before everyone else. I often can’t get to sleep at night because my brain keeps running about. Fortunately for me there have been situations where my fast reactions have steered clear of accidents where I feel others would probably not have been so lucky.

I often wonder if that faster “clock” speed is connected to IBS. I can certainly say I am guilty of eating quickly, a bad habit I picked long ago in pubic school where I hasted to finish my lunch and get out of the lunch room as fast as possible before either I got caught in the middle of a food fight or some bullies beat me up. And old habits, I admit, die hard.

And fast eating has been linked to IBS, although in another maddening inconsistency, IBS rates in Europe are about the same as the United States, even though they supposedly eat more slowly and don’t gorge themselves quite like “fat Americans” do. (That may be partially myth, however. I was in France and Italy recently and was astonished at the amount of food I saw consumed around me.)

Perplexity

Still, I admit one of my preventatives is to eat smaller meals more frequently. This isn’t always easy to do, as we tend to run on a three-meal-a-day schedule (or often just two) with appetizers and snacks thrown in. Who goes to a restaurant and orders chicken and lettuce wraps and then pays the check and leaves? Who goes to Friday night dinner at the in-laws and just munches on berries?

But the frequency of food intake is without doubt a factor. I notice that when I eat two large meals, one on the heals of the other, I am asking for trouble. I don’t always end up with IBS symptoms, but it raises the odds.

I also need to embrace the whole “mindful” bit: chew, really taste the food, swallow slowly and don’t gulp air. Stop at points through the meal to assess how hungry you still are or aren’t. Don’t just eat till your reflection is looking back at you on the plate.

Although we’re supposed to be gung-ho about fiber in our diets, many of us in the “twitchy stomach” club find that fiber can exacerbate our condition. I have to counterbalance my love for fruits and vegetables (and yes, I love fruits and vegetables, especially salads) with items that pass through me more slowly. I’ve found that pancakes, mac and cheese, mashed potatoes, and other generally forbidden foods (or at least foods nutritionists looks down upon) can settle and slow an otherwise hyperactive gut. I’m not encouraging anyone to binge on starches and sugars and fats, but some, in moderation, may help control IBS symptoms. It’s certainly worth a try.

These are just some minor measures, however. The good news is doctors and scientists are studying IBS as never before, and they’re getting a better understanding of its mechanisms every day. Breakthroughs will probably come in conjunction with the treatment for other, related ailments, but they will come. And then we will all be able to look forward to a better quality of life.