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Cure vs. Remission: Thoughts From a Crohn's Caregiver

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I hate the word cure, and for good reason.

People throw that word around willy-nilly when discussing all sorts of illnesses, especially inflammatory bowel diseases. People have claimed that they were cured of these medically incurable diseases through homeopathic methods, diet modification, and, in my favorite case, using their mind. These outlandish claims are not only wrong but facilitate the dissemination of misinformation that overpowers the discussion of chronic, incurable diseases like Crohn's disease and ulcerative colitis.

Merriam Webster Dictionary defines cure as "something (such as a drug or medical treatment) that stops a disease and makes someone healthy again" or "the act of making someone healthy again after an illness."

If you take this definition word for word, then technically anything that can be treated by medication or surgery can be cured -- that would mean that HIV and AIDS, lupus, asthma, cancer and inflammatory bowel disease, among many other incurable diseases, could all be cured. However, that is not the case.

Crohn's disease and ulcerative colitis are the two main diseases that make up the broad inflammatory bowel disease diagnosis. In patients with these diseases, the body's immune system attacks parts of the digestive tract and causes inflammation, cramping, diarrhea, bleeding and all sorts of other issues.

According to the Crohn's and Colitis Foundation of America,

"To date, there is no known cause of or cure for IBD, but fortunately there are many effective treatments to help control these diseases."

Medications, surgery, and diet modifications can help patients with inflammatory bowel diseases live regular lives. In patients with Crohn's disease, neither of these treatments induces a cure; the best they do is bring a patient into a symptom-free state (remission, see below). Patients with ulcerative colitis can be treated with the surgical removal of the colon; however, surgery will not cure the underlying inflammatory disorder that the patients have, leaving them susceptible to pouchitis, arthritis, skin ulcers and other autoimmune diseases. The bottom line: When you have an inflammatory bowel disease, you have it for life.

Part of the issue is the conflation of the terms "cure" and "remission." The cure of a disease and being in remission with a disease are not one in the same.

According to Oxford Dictionaries, remission is "a diminution of the seriousness or intensity of disease or pain; a temporary recovery." Two of the major goals for patients with Crohn's disease and ulcerative colitis are to achieve remission (an absence of symptoms) and maintain remission (prevent flare-ups of disease). CCFA reports that in a given year, 30 percent of patients with ulcerative colitis are in remission and that about 50 percent of patients with Crohn's disease "will be in remission or have mild disease over the next five years."

Remission can be achieved in many ways -- through medication regimens, by having surgery to remove diseased portions of their intestines, diet modifications, use of homeopathic treatments or maybe even using their minds. For those who have achieved it, I am so incredibly happy for you and jealous of you. My husband, who has had the disease for seven years, has yet to experience a period of remission. I hope that one day soon, he will know what it is like to live in remission, even if it's only for a few days. However, these periods where the disease is minimally active cannot be confused with being cured of Crohn's disease and ulcerative colitis.

The biggest issue at hand, though, is stating that a disease can be cured when it can't is not only false but it's harmful to patients, caregivers and the general public.

It creates misconceptions about a debilitating disease that impacts the lives of 1.4 million Americans. It minimizes what it is like to live with an illness where your immune system is essentially attacking your gastrointestinal tract as if it's a foreign invader. It encourages people to say to someone with Crohn's disease or ulcerative colitis, "Can't you hold it in?" when you can't, and "Isn't it in your head?" when it isn't.

It causes further confusion between inflammatory bowel disease and irritable bowel syndrome.

Those living with Crohn's disease and ulcerative colitis pray every day that a cure is found so that they don't have to meticulously plan their life around trips to the bathroom, doctor's visits, emergency room visits, medical procedures, medications and diets.

However, until researchers find a cure Crohn's disease and ulcerative colitis, I implore you -- please don't say these diseases can be cured when they can't. There is already a significant lack of understanding related to these diseases -- we must be focused on disseminating the right information and making people aware of these diseases, rather than spreading false truths.

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