Any time I hear someone say IBS–Irritable Bowel Syndrome–my ears perk up.

This afternoon I was listening to the Callie Crossley program on WGBH Radio. They were talking about drug shortages and the difficult position those shortages put patients, doctors, and pharmacies in. I remember how often we would go to the pharmacy at Dana-Farber for Jane’s octreotide and have to settle for a partial prescription. I remember being in the hospital during one of Jane’s crises and being told that the hospital was looking for more of the drug at other area hospitals because Brigham & Women’s supply was exhausted.

Today there are 250 drugs in short supply–many of them drugs that are used to treat cancer patients. I can truly feel their pain.

Then a woman called in. She said she had IBS and asthma–and that she was having trouble getting the drugs she needed because of shortages. But I was not paying much attention at that point. My mind was screaming NET at me. The combination of IBS and asthma is one of those things that rings the alarm bells in my head. It combines two symptoms that are related to NET.

I say this with such great frequency that to those of you who read this regularly I probably sound like a broken record: IBS is not a diagnosis. It is doctor-speak for “There is something wrong in your digestive tract that is causing gas, diarrhea, and intestinal discomfort, but we do not know what.”

What that needs to mean to patients is, “Keep looking.” And they need to insist doctors keep looking until they find the real underlying cause.

IBS can be caused by many different things–lactose intolerance and a gluten allergy among them. But NET is also on that list of possibilities–and while it may not be the most likely cause it is among the more dangerous.

But if that IBS is accompanied by other symptoms–among them the kind of wheezing that sometimes goes with asthma–then NET  needs to be moved up higher on the list of possibilities.

More than likely the woman on the radio today does not have NET. More than likely her asthma predates the IBS. More than likely her IBS is being caused by something other than NET. But she–and everyone who suffers from IBS–deserves a real diagnosis that gets at the real issues causing her symptoms.

IBS is a description–it is not a diagnosis.