Dear readers, this post is going to be indelicate. It will mention bodily functions. It is about bodily functions. So if you have a delicate constitution, or just don’t want to go there, I won’t be offended if you stop reading right now. However: It is also about the way we neuro-atypicals are treated by the medical establishment when our body functions go wrong. It is about the fact that we are pigeon-holed from the word “hello,” according to our medication list, and that we are, through the jaundiced eye of stigma, often the recipients of substandard care.
In a previous post, I discussed a medical aphorism: “If it walks like a duck, and quacks like a duck, then it probably is a duck.” The simple meaning of this, of course, is that if a person exhibits the symptoms of a disease, then they probably have that disease. Take, for instance, a case of appendicitis: if the person has severe right-lower-quadrant abdominal pain, with or without vomiting and/or fever, and certain specific signs on physical examination, then that person very likely has appendicitis. Or migraine: severe one-sided headache, an aversion to light, perhaps with vomiting. I’m sure you can think of your own examples.
What about Irritable Bowel Syndrome (IBS)? Conveniently, there are a set of specific criteria called the Rome Criteria, which were developed by the Rome Foundation. These are:
C1. Irritable Bowel Syndrome Diagnostic criterion*
Recurrent abdominal pain or discomfort** at least 3 days/month in the last
3 months associated with two or more of the following:
. Improvement with defecation
. Onset associated with a change in frequency of stool
. Onset associated with a change in form (appearance) of stool
* Criterion fulﬁlled for the last 3 months with symptom onset
at least 6 months prior to diagnosis
** “Discomfort” means an uncomfortable sensation not described as pain.
In pathophysiology research and clinical trials, a pain/discomfort frequency of at least
2 days a week during screening evaluation is recommended for subject eligibility.
Bolding is mine, to call attention to the fact that the single overarching diagnostic feature is recurrent abdominal pain or discomfort.
I have reason to be researching this condition, because I do not have it. I have something else that has caused my intestines to misbehave badly. I will tell you why I’m bringing this up in a minute.
Now that we have looked at the Rome Criteria (which, as paltry as it is, happens to be the “gold standard” for the diagnosis of IBS), we must consider some factors that absolutely rule it out. Things that do not walk or quack like ducks.
The biggest, baddest one is unintentional weight loss. If a person has IBS, by definition they do not lose weight. Conversely, if they lose weight, they do not have IBS.
Onset in middle age is another factor that calls the diagnosis into question. IBS generally starts in late adolescence or early adulthood.
But wait: if you have a mental illness, all bets are off. Listen to this introduction to the subject by an author on Medscape, the physician’s information superhighway:
Irritable bowel syndrome (IBS) is a functional GI disorder characterized by abdominal pain and altered bowel habits in the absence of specific and unique organic pathology. Osler coined the term mucous colitis in 1892 when he wrote of a disorder of mucorrhea and abdominal colic with a high incidence in patients with coincident psychopathology. Since that time, the syndrome has been referred to by sundry terms, including spastic colon, irritable colon, and nervous colon. (Bolding mine.)
And after two-thirds of a page describing the physiologic understanding of the illness, this paragraph follows:
Psychopathology is the third aspect. Associations between psychiatric disturbances and irritable bowel syndrome pathogenesis are not clearly defined.
Patients with psychological disturbances relate more frequent and debilitating illness than control populations. Patients who seek medical care have a higher incidence of panic disorder, major depression, anxiety disorder, and hypochondriasis than control populations. A study has suggested that patients with irritable bowel syndrome may have suicidal ideation and/or suicide attempts strictly as a result of their bowel symptoms. Clinical alertness to depression and hopelessness is mandatory. This is underscored by another study that revealed that patient complaints that relate to functional bowel disorders may be trivialized.
Let me ask this simple-minded question: is it possible that someone with a debilitating physical illness could develop a reactive depression as a result of having to run to the toilet 10 or 20 times a day, never knowing when the desperate urge might strike? Is it possible that a person, after being housebound as a result of this illness, might become suicidal? How about if that person, despite intense suffering without respite or relief, is repeatedly told that there is nothing physically the matter, and it is “all in their head”?
I will give the author credit for the following statement:
“Whether psychopathology incites development of irritable bowel syndrome or vice versa remains unclear.”
The remainder of the section goes on to list a host of physical pathology noted on colonic and small bowel biopsy; this, in spite of the fact that the entire premise of the article is to maintain that there is no evidence of physical pathology in IBS. Curious, that.
The point that I would like to drive home here, is that anyone with a psychiatric diagnosis who walks into a physician’s office complaining of abnormal digestive symptoms for more than three weeks is going to be labeled with IBS, whether their symptoms match the Rome Criteria or not. In fact, a recent position statement by a GI professional organization stated that diagnostic testing beyond a simple blood count is unnecessary if the demographics suit the diagnosis and no alarm symptoms such as dramatic weight loss are present:
The 2009 American College of Gastroenterologists (ACG) evidence-based position statement on the management of IBS does not recommend laboratory testing or diagnostic imaging in patients younger than 50 years with typical IBS symptoms and without “alarm features”. Alarm features include the following symptoms and history:
Iron deficiency anemia
Family history of certain organic GI illnesses (eg, inflammatory bowel disease, celiac sprue, colorectal cancer)
While rectal bleeding and nocturnal symptoms have also been considered alarm features, they are not specific for organic disease.
As a physician I find this shocking. I can think of many possible pathologies that would cause abnormal bowel movements with or without abdominal distress, such as giardiasis, lactose or fructose intolerance, gluten intolerance, hepatitis, pancreatitis, diverticulitis, even appendicitis, that could cause such symptoms. And given the fact that physicians today rarely lay a hand on a belly, many such problems could simply be written off as IBS.
My feeling is that IBS is simply a wastebasket name for “we don’t know what’s causing it, therefore we will trivialize it.” Just think about fibromyalgia, and how it was written off for so long as “psychosomatic.” Now there is a wealth of information about the pathophysiology of the illness; doctors take it seriously and even prescribe medicine for it. I don’t think IBS is one entity. I think it is a cheap moniker for a host of different enteric illnesses that have not been adequately described; and on the other hand, it is a convenient way to get rid of a pesky patient who doesn’t have something cut-and-dried like ulcerative colitis or Crohn’s Disease.
Of course I have a personal stake in all this. Four years ago my immune system crashed. I got all kinds of weird viruses that you’re not supposed to get in adulthood. My doctor thought I had AIDS so I had test after test, and after four negative HIV tests they finally decided I didn’t have it. Then my intestines began to refuse to digest my food. I lost 30 (yes, thirty) pounds, all the while eating like there was no tomorrow, because I was starving hungry. My body wasn’t getting any food! I got vitamin deficient; I developed a rare anemia from lack of folic acid. I broke my wrist because my bones had become brittle from lack of Vitamin D absorption. My calcium level was on the floor. I was in a foreign country at the time, and didn’t understand the language well enough to communicate with the specialists, so many tests went by the wayside.
Being a physician myself (which is not always an advantage when dealing with other physicians’ egos), I put two and three together. I have had recurrent bouts of bronchitis and pneumonia since I was born. I had developed malabsorption. Then I got a nasal polyp, just to complicate matters.
These three items add up to one thing: cystic fibrosis. At age 55? I started doing the research. Yup, it happens.
I got back to the States and cajoled a gastroenterologist into ordering the genetic testing for CF. Yup. Positive, but in the carrier state. She sent me to a CF center for a sweat chloride test, which is the gold standard for diagnosing CF.
The test value for absolutely negative is 20. The value for absolutely positive is 60. I came in at 58. Twice, because they couldn’t believe it wasn’t a lab error and repeated it.
They tested my pulmonary function. I have been a runner all my life, which helps me breathe. I played wind instruments for 30 years. I am a singer. My lung function in 1981 was 150% of normal. Now it is 110% of normal. They said I can’t possibly have CF because if you do, your lung function decreases by 2% a year. Do the math.
In the meantime, one GI doc literally threw a prescription for pancreatic enzymes at me from across his desk, because I was sitting there weeping. I took them, and magically began digesting my food. I regained 20 pounds over the next six months on the enzymes. In CF, you lose your own digestive enzymes and have to take them in pills.
Despite all this, when I went back to my GI doc last week for a recheck, she announced that she thinks I “just have IBS.” I was floored. I said, What about the fact that taking enzymes fixes it? She says, Oh, sometimes that can happen. I said, What about the fact that I have never had any pain? She made a face. I said, What about the fact that I lost 30 pounds before starting enzymes? She snorted and ordered a very invasive and expensive test to look at my pancreatic ducts with an endoscope, and left the room.
Who’s the quack here?