Almost a week ago, fashion designer Mychael Knight, who was a former star of the U.S. reality television show “Project Runway,” passed away at the age of 39. It is unfortunate that he apparently suffered from chronic gastrointestinal issues that may or may not have contributed to his death at such a young age. While he apparently believed that he had irritable bowel syndrome (IBS), many of the symptoms described in numerous news reports from various sources are not consistent with IBS. Furthermore, IBS is never a life-threatening condition. It does not cause or contribute to death, directly or indirectly. It is inaccurate and irresponsible of numerous print and online media sources to imply or state outright that Knight’s death was related to IBS. Nobody dies as a result of IBS.
While most media sources acknowledged that the cause of his death is not known or is undisclosed, many reporters surrounded that detail, in the same or adjacent passages, with mentions of Knight’s reported IBS. The New York Times wrote, “He [Knight’s friend and spokesman] did not specify a cause, but Mr. Knight had written on social media about his struggle with irritable bowel syndrome.” Time went further, writing, “…he [Knight] had written in the past that his struggles with irritable bowel syndrome were causing problems with his immune system, according to multiple reports.” The Washington Post wrote. “Knight had extensively shared his five-year struggles with irritable bowel syndrome, writing in now-deleted Facebook posts that he suffered chronic abdominal pain, a “leaky gut,” extreme fatigue and exhaustion.” Under a headline of “Mychael Knight Suffered From IBS Before Passing Away” Essence wrote:
Now, it’s be [sic] discovered that Knight shared his battle with irritable bowel syndrome (IBS) online, which put him in constant pain. “This year has really taken a toll on my health… badly,” Knight reportedly said in a social media post. “In short, IBS is a gastro-intestinal disorder in which the food I eat, my body doesn’t absorb (malabsorption) the nutrients from what I eat.”
Again, it’s not just unlikely that IBS caused Knight’s or anyone’s death. It is impossible. These are the scientific facts according to decades of peer-reviewed medical research and clinical practice by highly credentialed university based researchers on every continent of the globe: IBS is a functional gastrointestinal disorder, or as now stated in the Rome IV international diagnostic criteria
updated in May 2016, “a disorder of gut-brain interaction.” This means that the brain and the gastrointestinal tract do not communicate properly because of neurotransmitter issues, changes in the microbiome and other factors still under research
. By definition, in functional gastrointestinal disorders, there are no visible structural or metabolic abnormalities detectable on currently available medical tests.
Thus,”openings in my intestines,” as supposedly reported by Knight according to the Today
article linked by Essence
are not consistent with IBS. “Leaky gut” and “toxins”
are concepts promoted heavily by alternative medicine practitioners, preying on individuals who are sick and desperate, but this is not accepted by reputable physicians as a real diagnosis.
Various functional GI disorders affect different parts of the gastrointestinal tract, but IBS, the most common condition in this category, affects the function of the colon, also known as the large intestine. The purpose of the colon is to store waste and reabsorb excess water. Usable nutrients are absorbed in the small intestine, higher up in the digestive tract. Under Rome IV, and its predecessor criteria, Rome I, II and III, Knight’s “extreme weight loss” as reported in the Today article linked by Essence, is one of several red flags/alarm signs that an individual’s symptoms are not IBS or are perhaps IBS along with an additional unrelated diagnosis that causes the extreme weight loss. Many people with IBS who restrict many types of food or stop eating much altogether in an attempt to avoid symptoms will lose some weight as anyone who makes such dietary changes will, but this is not from the IBS itself. People with IBS and no other conditions that would affect weight who eat a reasonably balanced diet regularly do not lose significant weight or quickly regain any previously lost. Some people with IBS, like others in the general population, even are overweight due to factors also unrelated to IBS. Even people with very severe IBS do not typically look “incredibly fragile” and do not need to be “in a Georgia hospital… getting treatment for IBS” as reported by TMZ. While management strategies for IBS vary based on individual symptom patterns, preferences and effectiveness, ranging from diet, to stress management, to psychological therapies, to a limited number of available over-the-counter or prescription medications that are effective for a subset of affected people, there is nothing that can be done for IBS as a hospital inpatient that cannot be done by the individual with IBS at home.
Numerous media sources, including the Time and TMZ articles, link Knight’s alleged IBS to his immune system. The Today article quotes Knight’s social media posts as:
…toxins from that food leak into my bloodstream, which can cause autoimmune diseases (Diabetes, Lupus, Celiac Disease, Rheumatoid Arthritis).B/c of which, I suffer from chronic abdominal pain/diarrhea/nausea, EXTREME fatigue & exhaustion, food sensitives/allergies, foggy brain, headaches, etc. As of recent, I’ve develop [sic] some acute Autoimmune responses like Psoriasis, inflamed joints, and small respiratory issues.
However, irritable bowel syndrome (IBS) is not overtly connected to the immune system, nor is it an autoimmune disorder. The research evidence has never linked it in any way to diabetes, lupus, psoriasis, rheumatoid arthritis or respiratory issues, though since IBS is an extremely common condition as are many of these, statistically, some people will have more than one. Celiac disease and food sensitivities may also coexist with IBS and cause some similar symptoms to it, but they are separate conditions with different causes and treatments. IBS is known to commonly coexist with some other chronic pain conditions, none fatal, but does not or lead to cancer or any other medical conditions and is not life-threatening.
Yes, irritable bowel syndrome causes abdominal pain, intermittently or constantly for most affected, predominantly diarrhea for about a third, fatigue/exhaustion, nausea and/or headache for some. When moderate to severe, as functional GI researchers estimate it is for about 60% of people with IBS, it is indeed extremely debilitating and disruptive. However, that is where the similarities with Knight’s description stop. Functional GI researchers routinely emphasize that these symptoms are very common to many different disorders and are not necessarily, in themselves indicative of or related to IBS. IBS is also a very distinct diagnosis and not the catchall term that many people with IBS, family members, some medical professionals and the general public continue to believe. Physicians quoted by Today and by FOX 29/Philadelphia (television news video, runtime 3:38) speculate that Knight may have had a form of inflammatory bowel disease (IBD) such as Crohn’s disease or ulcerative colitis, which can cause extreme weight loss, structural changes in the gastrointestinal tract from inflammation, and potential complications in many of the body’s systems, including arthritis, psoriasis, and respiratory issues, as mentioned by Knight. Although with appropriate medical care, most people are able to manage inflammatory bowel disease for many years, it is possible to die from a complication. This sad outcome simply does not happen with irritable bowel syndrome (IBS). Unfortunately, because of the similarity in acronyms and some symptoms, the two are often confused.
A subset of people with inflammatory bowel disease also have irritable bowel syndrome, and it is possible that Knight was one of these people. It is also possible that the physicians in the news sources have made incorrect speculations, and Knight’s issues were something else entirely. However, Knight’s posts, as reported, mention so many different, unrelated issues that it is probable that he was at least partially confused about his own diagnosis and may or may not have been receiving reputable, appropriate medical care as a result. If so, and that led to his premature demise, that is tragic. IBS Impact urges all those who are experiencing gastrointestinal symptoms not to rely on search engines or quack cure theories that abound, but to seek diagnosis and care from reputable, qualified physicians and to supplement this with educational information from evidence-based organizations like the International Foundation for Functional Gastrointestinal Disorders for suspected irritable bowel syndrome, the Crohn’s and Colitis Foundation for inflammatory bowel diseases, the Celiac Disease Foundation for celiac disease, or Food Allergy Research and Education for food allergies.
However, what is also disconcerting is that so many media sources, ranging from highly reputable national outlets to local sources and obscure, less reputable ones, in print, broadcast, and online, took his statements at face value and proceeded to disseminate them worldwide, attributing them to irritable bowel syndrome as if it were the cause of Knight’s death. This is true of many other media sources besides the ones mentioned and linked in the post. Relatively few simply reported that the cause of his death is unknown or undisclosed, and even fewer, like Today and Fox News 29, linked above, chose to do any basic fact checking which would have revealed the basic information that irritable bowel syndrome is never fatal. If it were, with, conservatively, 10-15% of people affected by IBS in most countries worldwide, we would have a global public health emergency. As it is, decades after IBS/functional GI professionals began to establish that IBS is a real disorder, they, IBS organizations and advocates with IBS continue to labor to dispel the most basic and enduring misconceptions. With these new and plentiful reports about Knight on the internet, these inaccuracies will remain with us for years to come. To recently diagnosed or not very medically-informed people with IBS and their families, who often have a great deal of anxiety about symptoms, which in turn, are exacerbated by further anxiety, media stories incorrectly implying or stating that Knight died of IBS are needlessly alarming. Whatever the truth of Knight’s medical history, treatment, and death, which is between his survivors and his health care providers, he could not have died from irritable bowel syndrome because no one does. IBS Impact challenges all journalists who reported on his IBS to do better. IFFGD’s resource page for members of the media is a good start. Public awareness of any medical condition is a positive thing, but not if it is blatantly inaccurate.