In honor of Crohn’s and Colitis Awareness Week, as well as my brother, Will, who suffers from Type 1 Diabetes:
Wake up, its 2 AM. Bathroom time. Number 10 on the night. Good news, looks like you’re in competition for the world record in trips to the porcelain throne. Tomorrow’s pre-calc exam can’t hold a candle to that.
Bad news is you’re 16 years old, and this is your life now.
But hey, don’t sweat it, you’ve just joined one of America’s biggest clubs. And membership is growing every day.
That teenager was me. Seven years ago. My name is Chase Heltzel. I have Crohn’s Disease. And frankly, I’m a bit upset.
For those of you unfamiliar with Crohn’s Disease (CD), allow me to enlighten you on the situation. Crohn’s is a form of Inflammatory Bowel Disease (IBD), an umbrella term for a series of autoimmune diseases that cause inflammation in the gastrointestinal tract. Among these are Crohn’s, Ulcerative Colitis, and any other number of indeterminate forms of colitis. All of these are shitty conditions to have (pun intended). To gain a basic understanding of CD, I’ll put it like this:
The human bowel is an extremely busy and hyper-complex breeding ground for microbiological activity. Since I have CD, mine does not handle this all too well. Our guts are covered in a community of bacteria known as the microbiome, the hottest topic in microbiology and immunology these days. A normal immune system intricately operates within the gut mucosa to regulate the composition of the microbiome and remove any potential pathogenic invaders. In order to do this immune cells often are required to initiate a cascade of signals that cause inflammation at the site of pathogenic microbes. After that, natural healing processes begin. The issue is, my immune cells don’t like to quit causing inflammation when the job is done, and those involved in healing don’t like to show up for work. This could happen at anytime, anywhere in my gastrointestinal tract. It is pretty awful.
Now you may find yourself asking “Wow, Chase. How did your nasty ass intestines get so messed up? Eat too many of those sugar free Haribo gummy bears?” No. The reality of the situation is that there IS NOT A KNOWN SINGULAR CAUSE FOR INFLAMMATORY BOWEL DISEASE. Excuse my yelling. It’s just a bit frustrating. The best understanding we have of the origins of CD is a multifactorial paradigm involving microbiome composition, environmental influences, and genetic predisposition. These all have different commonly occurring instances show up in CD populations, such as similar gene mutations or types of bacteria in the gut, but there are many patients and nobody has it exactly the same. It really is tough. Often times, we know what processes are messed up, we just don’t have a good understanding of the trigger. But you know what is really messed up? Its not just CD patients. Its not just IBD patients. This is the case with a shocking number of autoimmune diseases in general. It’s Type 1 Diabetes. It’s Rheumatoid Arthritis. It’s god damned Multiple Sclerosis. Our immune systems are attacking us and WE DON’T KNOW WHY. This brings me to the major purpose of my ranting:
Autoimmune diseases are a modern epidemic in the industrialized world. And nobody is talking about it.
The rapid increase in autoimmune deficiency is alarming and likely happening at an exponential rate. This is not a case of better criteria for diagnosis, but a full on wave of sick individuals that would not have been in previous decades. Diseases that would only see a handful of patients in the hospital every year now bring in hundreds of unfortunate men, women, and children every day. The American environment is toxic. Our people are consuming the scum of the earth, daily. We are stuck in a destructive marriage with the ways of our society and will tumble down into a dark abyss along with them. In sickness and in wealth, the bottom line today is a priority over the human lives of tomorrow.
In order to combat this bleak situation that is becoming increasingly dire, we need to make massive changes to how we currently approach them as a risk to society. For starters, there are two areas in which need to do this
1. Federal research funding towards autoimmunity as a condition.
2. Public health initiatives related to environmental health and healthcare policy that focus on the potential prevention of autoimmunity
Again, these are massive undertakings, more easily said than done. But autoimmunity has become a problem with such momentum that we can only stop it if we make big leaps. Small steps in the right direction are no longer something we have time for. It is likely that ~50 million Americans or more suffer from autoimmunity. Currently, The National Institutes of Health (NIH), the largest financial supporter of biomedical research in the United States, funds cancer research the most at somewhere greater than $5 billion a year. Cardiovascular disease and stroke funding from the NIH comes to ~$2 billion a year. Autoimmunity gets about half a billion. However, in all likelihood, Cardiovascular disease and Cancer patients combined don’t even reach the same number of total people living with autoimmune disorders. Let me pile on here a few more stats, if you don’t mind?
Healthcare burdens for Cancer in the US stand at $9 billion annually. Autoimmune diseases are costing around $100 BILLION EACH YEAR. And believe me, that differential is only going to grow wider and wider. It is essential that funding for research programs in autoimmunity gets more support. Yes, Cancer is terrible. But we have so much more to lose once we become a society of sick, overly medicated sad sacks. In fact, people are getting cancer from having autoimmune diseases. IBD patients are faced with the significantly increased risk of colorectal cancer to go along with that delightfully uncomfortable gut we get to live with, already. And I am not even going to get started on the long term implications of immunosuppressive therapeutics used to treat most patients with these conditions. That is a whole other article worth writing, and a lot more dedicated biomedical research needed.
Now, to my second area of need: Public Health Reform
This one is big. We need to change the way we live. We need to put forth initiatives that flip society as we know it. And this needs to happen now. The American public can not be allowed to continue ingesting the unnecessary toxins and chemicals they are blindly absorbing on a daily basis. The current state of what enters the majority of the public’s bodies is an environmental, medical, and moral disaster. First, we need to consume more holistically. The fewer non-whole ingredients in your diet, the better. You want things looking more or less in their original form. No strange, unrecognizable chemicals ingredients. Your body is easily naturally capable of handling these whole ingredients, while many of these stray chemicals are likely having unknowable interactions any number of things in your metabolism. The FDA and other health regulatory agencies need to come down hard on what we consume. This sounds harsh but we cannot play around like these aren’t severe issues on the brink of catastrophe. Health organizations need to focus on promoting truly healthy consumption and finding ways to get better food and lifestyles in the grasp of the middle and lower socioeconomic classes. Not every blessed American man and woman can have the honor of shopping at Whole Foods every week. Some people (hell, too many people) are living on that Wonder bread and Arby’s diet. That can’t fly anymore.
Secondly, we need to adopt a new philosophy in the treatment of patients, especially those with autoimmune diseases. Medicine needs to become more personalized. Every individual is different and has diverse needs that can be met with the numerous clinical research tools we have available today. No more one size fits all. No more throwing antibiotics at it, no more “when in doubt, debilitate the immune system!” What we need is Precision Medicine. Personalized treatment that realizes these conditions are multifactorial and benefit most from a versatile, combination approach. Using research data such as massive scale health informatics, genomic information, pharmaceutics/nutraceutics, and microbiome assessment, we should be able to tailor a treatment plan to each and every patient. Crohn’s Disease, with its particular combination of microbial, genetic, and environmental factors, is the perfect testing ground for the precision medicine approach. This is so much the case that the Crohn’s and Colitis Foundation of America (CCFA) has started a program called IBD Plexus, which is working to help make the use of precision medicine in IBD a reality. Putting efforts towards the creation of initiatives that support this sort of medical methodology and the research needed to make it happen must become a priority.
Now its getting late, and I am a bit tired of rambling, but I have a few more things to say. To all the people reading this, normally healthy or not, please do everything you can to live by example and make healthy decisions for you and the future of our people. Hell, if anything, do it for your kids, your grandkids. We can only change as a group.
Every day since I was 16, I have had to take between 6-10 pills just to keep myself in some semblance of well being. I still feel awful much of the time. Like many Crohn’s patients, I wear a smile that has been perfected to hide the pain I feel oh so often. Still, that is not the worst thing. What is truly disheartening is that with the rate society is going, my plight could become that of the majority. That my friends, is the hardest pill to swallow.
And to all my fellow IBDers who made themselves #IBDvisible this week, and to all who suffer from autoimmune conditions:
Never give up. Get angry, but don’t give in to it. Use it. Be angry about what has happened to you and fight every single god damned day to make a difference. Fight to make sure no one HAS to ever understand how you feel. Fight because you feel that wretched growl in your bowel and you want to shut it up. Get up every day and dig through the blood, the crud, the pain and the shame and come out the other side a stronger person. You are not broken. You are not worse than anyone else. You are visbible.
One thought on “The Hardest Pill to Swallow”
This was very enlightening, Chase. I never really had a grasp of what you dealt with on a daily basis. Your explanation helps me appreciate your efforts that much more. Keep fighting brother.