Hard to Accept: An IBD Soldier

I recently had the honor of talking to Reddit User /u/JustSomeoneWhoCares, who is submitting the first Contributor Content for GUTS.

His story about his struggle with Ulcerative Colitis, as previously posted on /r/CrohnsDisease:

I’ve just recently started using reddit. I’ve used it for awesome videos, funny pictures, interesting facts and tidbits of information, but I never thought about using it to vent until now. My story is one of disappointment, frustration, pain, agony, defeat, destruction, and finally, redemption.

I was diagnosed with Ulcerative Colitis when I was 16. It started out as a little pain. Then a little blood. Then more pain. More blood. I was embarrassed. I had no idea what was going on. I’ve always been a quite person. I flourish in social scenes, but I keep my cards close to my chest. I didn’t tell anyone. Not even my mother who is also a UC patient. I suffered in silence.

When I was a boy, I had always dreamed of being in the Army. Not the Marines, or Airforce, but the Army. My father was in the Army. My uncle was an Army medic who was killed in Vietnam. My grandfather had just been drafted into the Army during the Korean War until his experience as a car mechanic made him eligible to work on a thing called a “computer”. I had always dreams of being a military man. Back straight. Eyes forward. Chin out. I wanted to be something that little kids gawked at. I didn’t want to join for any other reason other than that was what I felt I was born to do.

I began physical training when I was 14. I began running to school, going to football practice, then running home. I mowed lawns to buy a weight set and began lifting. I was focused on becoming the quintessential picture of a soldier. I had dreams of being Special Forces. Those unnamed faces. Those shadow warriors. I wanted to lead the fight against my country’s enemies, because I felt, and still feel, America is the best place on the face of this Earth. I had already become a regular at our local recruitment office, just hanging out, getting to know the slang, seeing the way soldiers bred soldiers. I wanted to be them.

When I turned 16, nothing had changed. I was in top physical form. I had a wonderful girlfriend, fantastic grades, and was on track to joining straight out of high school.

Then I got sick.

It started as some pain in my abdominal region. I shrugged it off as the stomach flu. But the pain persisted. Become worse. Then the blood came. Just a little at first. Barely a tinge of red. I’m ok I told myself. It’s nothing. I’ll be ok. It’ll be ok. The first month passed with no relief. The pain only got worse. The water more red. After three months, I was barely standing. The body I had worked so hard to perfect was a shell of its former self. I had lost 35 pounds and enough blood that I had a yellowish tinge to my skin. My mother finally took my to the doctor where I came clean about when I had been suffering through. While relating my story, my mother began crying. She knew the reason for my pain. She had suffered through it herself. She knew I had Ulcerative Colitis.

How could this have happened? I wasn’t meant for this. I was meant to be a warrior. I was meant to be that man on the poster, that soldier on your campus. I was meant to be a soldier. I wasn’t meant to get sick. To bleed from invisible wounds. I was meant to defend my country. To fight for what I believe in. I wasn’t meant for this.

After a few tests, the admitted me into the ICU of the hospital. This was the first time I had morphine, and god it was delicious. The pure rush of nothingness and everything all at once through IV and into your soul.

I laughed and laughed.

Then came the blood transfusions. A stranger’s blood is all the stranger when it’s slowly sliding its way through your veins, becoming part of you. And oh the delicacies of hospital chicken broth. I was miserable. I longed to run. To jump. To fight. But “no” says the doctor. You need rest. “No” says my doctor. You need these tests. “No” says my doctor. You have Ulcerative Colitis.

What the f@#%.

And oh god, the tests. I can’t quite remember any of them save one.

The berium enema.

I’ll make a long story short.

They make you drink metal 7-up that makes you have to crap acid. “Just try to keep it down.”

They tell you not to use the restroom. “But I have UC doc, I shit regularly!”

They stick a plastic tube into your rectum. “…”

They inflate the tip of the tube that’s in your rectum. “!!!!!!!”

Then they have you walk over to this space age torture device that’s made out of the shiniest metal.

“Hold still”, says the technician. “And try not to move.”

I’ve never though myself a great multitasker, I usually focus on one task till it’s done. But trying to focus on not moving, while a balloon is inflated inside your inflamed rectum, while lying on a cold, flat, metal surface, while it’s rotating to various 45 degree angles, you tend to learn to multitask.

Because after all of that, you just really don’t want to shit yourself.

One thing that kept my spirits up in the midst of all of this, were the visits from Angie. Her raven hair. They way she always smelled of cocoa butter. Her shining, newly braces-free smile. She was the best part of my day. A kind word. A kiss on the cheek. She always was the best.

She brought me a giant card made out of a brown paper bag you get from the grocery store that a bunch of people from school had signed.

The greeting in it said, “Sorry you have leukemia.”

I laughed and I laughed.

Fast forward to graduation. I’m not as strong as I was, and I get winded a little quicker, and I’m still bleeding here and there, but I’ve got stranger’s blood. I’ll be ok.

I miss going to all the grad parties because I’m so weak. Angie falls asleep with me on the couch. She always was the best.

Two weeks later I stretch my legs and slowly make my way down to the recruitment office. My birthday was a week ago and I’m 18 now.

“Hello Sgt. Mendoza.” “Jesus, what the f@#% happened to you?” “Leukemia. Can you believe it?”

I open up about my diagnosis. The medications I’m taking. The stranger in my veins. My immune system that’s so bad ass it tries to f@#% me up. I lay it all out.

“Ok”, Mendoza says. “Let me talk to the doc and we’ll see what we can do.”

“Sounds good sir.”

We shake hands. It’s last time I’ll see him.

Two weeks later I get a call.

-beep- You have one missed call. -beep- Hello. This message is for Jacob. This is Sgt. Mendoza. I spoke to the doctor and unfortunately you will not be able to join. If you have any questions, feel free to call. Goodbye. -beep-

I sit in that 6 o’clock haze. The kind when the sun and the night are battling for dominance, and everything just gets grey.

But what am I supposed to do now. I call him back.

“But I haven’t planned for anything else. Is there anything I can do?” “Kid, you can’t even join the Coast Guard.” -click-

Fast forward two years. The decent was quick. I blamed myself. I blamed my mother. I blamed God and all of his f#@%ing infinite bullshit. I blamed Angie and the stress she caused. She left me. She always was the best.

Whiskey became my compatriot. My brother in arms. Marijuana became my unwinder. My chill mode. Ecstacy became my f#$% yeah. My OH F@#% YEAH.

I partied. I boozed and schmoozed. I laughed and I laughed.

The pain was constant, but I had accepted that it always would be, so why the f#%@ try.

I still read up on the war. I still called everyone “sir” and “ma’am”. I tried community college, but I couldn’t stay focused. It always seemed as if the classes were quieter. My stomach liked to party and wanted everyone to know.

I raged. I beat myself up. I stared at a knife, and wondered what it would be like to bleed from somewhere else.

I had been taking prednisone since being diagnosed, since there wasn’t much else to take.

I raged. I roid’ raged. I beat my fists and cursed the world. I spit and slavered. I shouted and seethed. I was frustration incarnate. I was crazy.

I had become a shell of my former self. Skinny and sad. Weak and wicked.

I stayed up late and slept in later. I thrashed and pushed my way to a greater high. A better time. All to escape the pain.

It all came crashing down around me one night. We were in L.A. We were f#$%#@ up on ecstacy. And I just remember holding hands with this girl while watching the paramedics try to revive this little raver girl who forgot to breathe. She didn’t make it. Something inside me cracked that night. I left the next morning with no word.

I told my mother of my drug-fueled rampage of self-loathing and remorse. She said it’s ok. We’ll get some help.

“So, tell me how you feel.”

That doctor wasn’t prepared. My fear. My hate. My sadness. My happiness. My crazy side. My compassionate side. My wild side. My calm side. “F#$% the world and f#$% UC.”

After a while, I finally got all of the hot air out of my lungs and finally had time to listen.

She was right. I shouldn’t blame myself. She made some sense. I’m not the first person to feel crazy because of things that are out of my control. She tried to talk to me about God. “Not really my bag doc, but I’ll listen if you talk.”

And listen I did. And it helped.

I quit the drugs. I quit boozin’ every night. I stopped hanging out with people who promoted my craziness. But most of all.

I stopped blaming myself.

Fast forward to now, I’m 3 years sober, with only the occasional Johnny Walker Black neat.

I smoke cigarettes, a nasty habit leftover from the crazy days, but I’m hiking every chance I get.

And lo and behold, my UC has been in remission for 2 years. It seems that my own blame I had placed upon my shoulders caused my system to get all screwy. I had nowhere to turn to send the blame. Blame for getting sick. Blame for losing Angie. Blame for all of the bad things I had done. But most of all, blame for not being able to pursue my dream. I wanted to be soldier. I wanted to be that man that kids stop and stare at. I wanted to be someone that could be idolized. Yes sir. Yes ma’am.

So I do, everyday.

I’m polite to everyone I meet. I open doors and offer it to anyone who’s behind me. I lead by example. And just because I don’t have a uniform, it doesn’t mean I can’t act like I do. I try to do my best in every aspect, in every way. Every single day.

Because that is what being a soldier means to me.

Thanks again to /u/JustSomeoneWhoCares for allowing GUTS to share.

The Hardest Pill to Swallow

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.

Howdy, friends!

Hello, all, and welcome to my first public blog! Thanks for checking it out and reading whatever ramblings I have decided to put on display. I decided to initiate this site as a sort of personal outlet for me and others to talk about and discuss things that are important that we see in the world today regarding public health, immunity, inflammatory bowel disease, and any other nonsense that has been rattling back and forth in my mind. This is new territory for me, so I hope I can create some content that might provide some enjoyment or inspiration to people. If only a single person other than myself gets something positive out of it, I believe I would feel pretty good about that. And if I end up just sitting here every day typing to myself, that’s probably fine too. Writing can be nourishing for the mind and soul and I haven’t done too much of it (outside of a scientific research setting…) in the past years.

Generally, I will be trying to post significantly about topics related to public health and science associated with autoimmune diseases and the need for initiatives that will help prevent the massive threat they quietly pose to society. As a person with Crohn’s Disease, this is something I am very passionate about and will talk about often. I am attempting to delve in to higher graduate studies and research in the fields of epidemiology and pubic health so an audience to read and give feedback on my posts and articles would be amazingly helpful! Constructive criticism, well wishes, and even saying you find something posted interesting or informative could provide invaluable insight on perfecting my craft and how I could make it better, or even gain new knowledge and perspectives myself! I think the best case scenario is that I could facilitate a realm of constructive discussion and information sharing through this site and I think it would be just delightful if that came to fruition.

Other than the serious stuff, I am a classical nerd and science fiction junkie, a hopelessly cursed DC sports fan, and a bit of a sucker for a little pop culture trivia and history lessons. So occasionally I will probably rant about those types of things (My secret side ambition/dream is to be a science fiction writer…maybe getting into a little writing here on this blog will spark an inspired idea for this. Who knows? )

So, once again welcome to my blog and thanks for checking in! I’ll try my best to create content and not be too much of a insufferable dork.

All the best to you and yours,