Seventy-three days

...is how many days per year that IBS patients report "restricted activity" due to their symptoms. When presented with a hypothetical drug that would make them symptom-free but shorten their lives overall, they would also give up 25% of their remaining years of life in order to be free of IBS. (Click here to read the survey by the UNC Center for Functional GI and Motility Disorders.)

WHOA. Let's just take a second here. First of all: 73 days!!! Let's say we took all 73 days in a row. That's over 2 months! If your friend wasn't feeling well for over 2 months, would you find that strange? Terrible?!

The reality, of course, is that these 73 days are experienced throughout a year; sometimes there are little clusters of bad days and clusters of good, sometimes they are sporadic. That means that throughout a typical year, we are wrestling with these symptoms on a regular basis.

It's no wonder, then, that patients with IBS are so desperate for relief from their symptoms that they would give up 25% of their remaining lives to be free of this disease. That means that if you're 50 now, and your life expectancy is around 85, you would cut your life short by NINE YEARS.

Often I have felt that, because IBS is a "functional disorder," I have not been treated seriously by doctors and/or specialists. I have been told to "try to relax" and "eat more salad" [don't even get me started on that one right now]. A few of the more sensitive doctors I've seen said "Hopefully this drug will help, but this is a very tricky disease and there is no cure."

True, we won't die from this disease. True, it won't lead to other diseases like cancer that could kill me. But please, can we make IBS a priority??? Seventy-three days, people! Nine years, people!

We need to take a minute in our entirely-rushed medical appointments to say: "This disease is really affecting my life in a huge way." Maybe you can give an example of how it affects you, say that time you had to run out of your presentation to go to the bathroom, or you missed your daughter's soccer game, or you had to pass on that holiday dinner.

It's advocacy on the most personal, basic level, and it can be very effective. IBS is one of the most commonly seen diseases in a primary care physician's office. Imagine if every IBS patient took a moment to explain to his doctor that this disease is preventing him from living his life!

If you have performed this kind of advocacy in your doctor's office, I salute you, sir or ma'am! Please comment below on any effective words, phrases, or techniques you've used to get your point across.

Let's do this.

Okay let’s face it: IBS does not stand for “I Be Sexy.” It stands for Irritable Bowel Syndrome, which is about as unsexy a condition as I have ever met. But, understanding that this is perhaps the most embarrassing disease there is, did they have to give it a name like that?! Perhaps you prefer one of the less common, alternative names like Spastic Colon. Not much improvement there. Thanks, Science!

And really, this disease is humiliating. In my opinion, there is truly nothing as humiliating as a pooping problem. And so we are silent. And so we invent elaborate stories to remove ourselves from dinner parties or meetings, or maybe we don’t go to them at all. And so we become removed. And so we are afraid to leave our homes. And we become more anxious, which of course leads to more symptoms, which lead to more anxiety, etc, etc.

Our bodies betray us. Even if we treat ourselves well, eat right, exercise, reduce stress…STILL our guts can go on strike at any time and hurt us. And when I say HURT, you know what I mean. We’re not talking about “discomfort” here. Sometimes we are unable to walk or drive, much less work or have fun. Sometimes we are unable to do anything except curl up and wait for it to subside. Sometimes we pass out from the pain, or we end up in the ER or urgent care clinic.

Most people with IBS have seen numerous physicians and/or GI specialists if they can afford the costs. They’ve tried several prescription and non-prescription drugs…anti-spasmodics, anti-depressants, antibiotics, anti-inflammatories, anti-cholinergics, painkillers, vitamins, fibers, probiotics, yogurts, teas, herbs, acupuncture, hypnosis, psychoanalysis. Some don’t eat wheat, or dairy, or meat, or fruit. Some don’t drink coffee, or tea, or soda, or juice.

Do any of these remedies help? I think the typical answer is: “somewhat.” But there is no cure.

How many hours per week do you spend worrying about or dealing with this condition? How many days, weeks, months, even YEARS of your life have you spent fighting it? How many times have you had to call in sick at work? How many times have you wanted or needed to spend time with friends, family, clients, and co-workers, but couldn’t because you were paralyzed with fear at what would happen when you sat down at the dinner table? How anxious have you been about an upcoming family vacation, a road trip, a plane trip, or just an afternoon walk?

THIS IS UNACCEPTABLE. This is a disease that affects MILLIONS of Americans. The National Institute of Health (NIH) claims that up to 20% of our population suffers. It costs BILLIONS of dollars in medical care and lost productivity in the workplace. And of course, I’m just talking about America here. This is a worldwide problem that deserves first-class attention.

And YET! IBS research is underfunded. The International Foundation for Functional Gastrointestinal Disorders (IFFGD) writes that “federal funding for functional GI and motility disorder medical research currently lags behind that of some less serious and less prevalent conditions, and patients frequently face issues regarding access to care and availability of treatment options.” (http://www.iffgd.org/site/advocacy/).

WHAT IS UP WITH THAT?!

Let’s change this, people.

Okay, so, we have a disease that involves poop. Poop is gross and embarrassing and all that. Yes. NEXT!

Please join me. Let’s figure out how to get IBS the attention it deserves. Let’s feel better and be more free to live our lives however we choose, and not be controlled and tormented by this despicable condition. Let’s cure IBS!!!