IBD Journal: 70 Pills to Live

70 pills to Live

70 pills. Every week, a big countdown. 10 a day. 7 days a week. That’s how many it would take to keep me alive. 70 pills to bleed at a minimum. 70 pills so I don’t live curled up in abdominal pain. 70 pills so it doesn’t feel like my guts are going to spill out onto the bathroom floor. For me, that’s what it would take.

When I was diagnosed with Crohn’s Disease, this is the life I was given. It is a life many with autoimmune diseases know very well. It is a struggle, and an immense suffering that manifests itself in many more ways than anyone on the outside could even begin to imagine. For many of us, the story is the same. Our medical treatments are designed to keep us alive, but they don’t make us feel like living. That is a fight that we have to carry on ourselves. My 70 pills did a semi-acceptable job of keeping my body going, but the mental and emotional struggles of this life have been immense. Out of some sort of misguided pride, I often find difficulty admitting this aloud and do not present it as a problem to those in my life, but it is a struggle that I suffer from today as much as I ever have. The teenage depression and anger I felt at diagnosis have only become bad habits and deep-seeded psychological torment in my adulthood. I often find myself calm on the outside but constantly screaming internally. I feel such fervent disdain for the circumstances of my life. Even as I write for this website and conduct research, all these things to try and live by example and fight for a better world for those with Crohn’s, I do not feel like a person to be looked up to. My pain has turned me very bitter, and difficult to love. The emotional toll has left me drained, and otherwise unfeeling to many things others would be more sensitive to. It seeps into my personal relationships; connections and bonds I now fail to maintain. In life and for my website, I strive to demonstrate a warm and driven passion for my life and fight with Crohn’s Disease to try and help inspire others. But in reality, I like anybody else in the same situation, am not in control of this disease and not in control of the suffering it brings me. Most of the content I try to write is for uplifting this autoimmunity community and furthering the good fight. This is not one of those entries. This is a confession, that things are not alright, and that life is god damned hard.

My 70 pills were a chain and ball. All treatments are. That’s how I felt and I’ve carried that with me for a very long time. Ultimately, I was limited to what I could do with that supply. Constant thoughts of can I do this or go there and for how long with what drugs I have available. Will they be available? Will they do there job? You feel defeated, unable to navigate  the world with the freedom that others have and don’t nearly take advantage of enough. I, for 8 years, have continuously felt limited in ways that are both excruciating and horridly embarrassing. I can barely bring myself to go camping out in the wilderness. I have to worry about how I would manage my need to violently evacuate my inflamed bowels outside in the woods. Believe me it is not easy to be in the wilderness with an active, severe inflammatory bowel disease. A fully functioning restroom is essential and almost always has to be within my reach. I frequently dream of hiking long portions of the Appalachian Trail or the Pacific Coast Trail, and as it stands now, I don’t see myself being able to do those things. And it destroys me. The burning of your soul that occurs when you see these things you never knew you wanted and now it is as if you cannot attain them, is an unbearable inferno.

Sometimes, I just feel useless in life. I suppose everyone feels that way at one point or another. Recently it has been more often than not, though. In these times I often think of the song Helplessness Blues by Fleet Foxes, one of my favorite bands.

“What good is it to sing helplessness blues?
Why should I wait for anyone else?”

It suggests that it is useless to complain about the lack of control and nature of one’s life, and that you have to take it into your own hands. I try as hard as I can to do this. But as I type this I am in one of those time where I can’t help but feel deep inside me that there is too much to overcome. For many years, I have suffered chronic depression. I will stop everything, let the world go by, and just stay in my bed. Hide from the world. Unmotivated, and uncaring. To achieve any of my goals in spite of this has been the greatest tribulation of my life. There are days where I am a festering corpse. I lay there, intestines screaming, gut in hand, teeth clinched, incapable of normal human motor function. This position has become too defining of my life. Too familiar.

I have loathed myself. For a disease I can’t control. For depression I can’t overcome. For not seeking out better treatment. For not giving myself the chance to just “focus on myself and my health”. I wallow like a miserable fool. I am easily upset and have easily avoidable clashes with those that I love. When something awful happens, and It appears to me to be a result of my Crohn’s, I think about dying. I fear colon cancer will handle that for me someday before I am ready. Suicide has been far too casual a passing thought for me these past years. When I am really suffering, and life is not how I want it to be, I think how would it not be better to just die? I know that it is stupid and wrong. I know it is never the answer. But in the midst of it all, you just want it. I convince myself I don’t do it because I am strong, but really I think I am too cowardly to try.

Recently I applied for a scholarship to help fund my Master’s. It was $15,000 to 45 people with different autoimmune diseases. I didn’t think there were 45 people who would apply that were better qualified than me. Everything I have worked for. The absolute dedication I put forward these past years. I not only lived with my disease, but I have lived for fighting it. Research, advocacy, pushing a career path based around the fight against Crohn’s. And I didn’t get it. It was a very low point for me. It still is. It made me feel like my struggle, and all the fighting I have done was invalidated. Have I really achieved anything? Will I ever be able to overcome this life? The irony that I was suffering an intense disease flare up when this happened was a certain level of irony that felt unbearably tragic and painful. It was hard. And it is going to hurt for a long time. And my bowels are going to keep hurting for a lot longer. I continue to dream of a day where it gets easier.

I do not know what I really wanted to say with this entry. Obviously, life is hard. And Crohn’s is a B-I-T-C-H. I guess, I just really needed to vent. To not where my fighting the good fight hat for one night. That sometimes it is just too painful to act happy despite the disease. To let people know that I do have some problems, even though I’ll probably say I am fine when you ask. And that I am never in the business of asking for pity, but on this one occasion that even if I say that I am fine, that I will always appreciate it if you give and extra little encouragement when you talk to me. I think it could go a long way for a lot of people who don’t feel like admitting their problems, and they don’t have to have a disease. It just goes for everyone. We all have struggles.

If you wanted to know, I do not currently take those 70 pills anymore. At least not all of them. My treatment path has been a long and winding road, and I am traveling it looking for new ways at the moment. Despite all my sadness and frustration, I am hopeful that path will lead me to the life I want very soon. Hope is the best tool you have, even when they offer you 70 pills to live.

 

I am going to get some sleep now, thank you all for reading my vent, and I promise I’ll be alright. And to all of you with Crohn’s, or another condition, or anyone just suffering: Keep going. Find your reasons to fight. Know that the sadness will come and it is a part of who we are. And know that I and many other people care about you, and that you are worth something.

Much Love,

-CTH

Stuck in the Predni-Zone

Hello, friends.It has been not even a whole month since GUTS has really opened for public viewing but the viewership, response, and contact from enthusiastic contributors has been more than I could have hoped for, thus far. I’ve gotten to develop some fun content and hear from some amazing people who fight disease everyday. Here is to a new year and to keeping the train a-rollin’ on!

In other news, here is an update from myself about life with IBD:

2, January, 2017 – Stuck in the Predni-Zone

So, it has been a long and winding road for my Crohn’s Disease the past months. Since the summer, I have gone through several massive life changes, largely in part to the condition of my health. Back in June, around the time my lease was ending in Blacksburg, Virginia, I was still working my previous laboratory position. This was at an institute I had  been working at for many years. In the years during that time after graduating from University, I had a bunch of battles with my Crohn’s. I could’t seem to shake it. So many vicious flares, new doctors (a couple I just couldn’t seem to see eye to eye with), and a constant fatigue that seemed to follow me around like a dark storm cloud everywhere I went. My lease was ending and it struck me that I would have to make a hard decision to benefit my health long term. It was short notice, but I decided to leave my job and move back to northern Virginia with my family temporarily to focus on getting my Crohn’s to a better place. It was often extremely stressful and required an unmatched dedication to the lab, but I loved Inflammatory Bowel Disease research and the people I worked with. It pained me to leave them behind. Ultimately, I knew that I was ignoring major issues that could cause me to get serious intestinal surgery if gone unchecked, and I was never going to fully commit to making myself better. There could be no competing priorities in that regard. And for my work at the lab, I would not be able to live up to the rigor of the research and required day to day excellence expected of the people who work there. I was, often times, a zombie walking the halls of the institute. I would let my colleagues down and hold them back in the state I was in. 

Next thing I know, I am letting my boss and mentor know that I was going to have to take my leave, began training others on necessary management responsibilities of the lab, packing up my maroon Honda CRV (Virginia Tech colors even when I drive, Go Hokies) and heading back to Northern VA. During the next few months, I rested, hid from much of the world, saw doctors, got prescribed LOTS of drugs, and asked myself “where do I go from here?” Well, after a few months I managed to get myself to a state where I felt I was healthy enough to jump on job offers and stop bothering my parents since I am a grown-ass man. Eventually, I started my current position with a contract research organization coordinating large molecule pharmaceutical studies and I accepted my offer to start a Masters at George Washington University. So, life has been getting back on track. The problem is, I have been taking Prednisone in my therapeutic regimen. 

Since July. 

That is 6 months on Prednisone. I was supposed to wean off it quite a while ago but I can’t seem to find myself feeling well enough without it.

I’m stuck in the Predni-Zone…

For those of you that are not familiar with prednisone, it is a steroid that is used by millions of people with inflammatory diseases to get their problem under control when it is severe. Most people with Crohn’s have a complicated relationship with prednisone. It often gets the job done, keeping you out of the bathroom or making your abdominal cramps disappear, but it has side effects like no other. In the long term, you really don’t want to deal with that crap. It is bad, believe me; I am a pred-vet. So now, I have to find a therapy that will get me out of the vicious cycle. But it is not easy. I have a strong aversion towards anti-TNF biologic use (i.e., Humira, Remicade) and the recently approved Stelara gives me similar discomforts. All of the sudden my options seem…limited. I am already taking Imuran with my pred, and it is just not enough. After talking with my GI, I will be looking potentially into getting involved in the anti-MAP antibiotic clinical trial and see how that works for me. I am not high on long term antibiotic use as a treatment approach but I am willing to say that it concerns me less than what I believe are massive unknown implications of biologic use. We’ll see…

Until then, thanks for reading my IBD journal update everyone and I appreciate you all coming to the site. I will update again soon to discuss where I have gone to try and escape the horrid Predni-Zone. Make sure to check out other articles on the site, read stories by our contributors, and share or comment on anything that resonates with you.

All the best to you and yours,

CH

 

5 Holiday Gifts for that Special Crohnie in Your Life

Hi everyone,

It’s that magical time of year again and GUTS is here to give some lovely gift ideas to counteract the gift that keeps on giving; your inflamed bowels.

At GUTS, we have that knack for digestive gift giving that will make your butt hole say “thanks!” instead of DEAR GOD GET SOME SOFTER TOILET PAPER”, and we want to share it with you!

GIFT NO. 1 – A Squatty Potty

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“If pooping with your pants still on is cool, then you can call me Miles Davis!”

Aw yiss. The Squatty Potty. The true natural, #1 way to go #2. Have you been saying your whole life, “Man, going poo really sucks and feels like a total hassle.” That’s because you’re doing it WRONG you ignorant rube. You were born to squat when you defecate. Your colon kinks and has difficulty passing stuff when you just sit on the toilet. Putting your legs up into a natural squatting angle makes your poo’s come out nice and smooth and can potentially even reduce your risk of colorectal complications later in life. Your buddy with the special bowels will be saying “Wow! My poops feel mad decent! Magical even!” But in the case of a Crohn’s patient, best you can hope for is regularly decent, I guess. We can all dream, right?

Wait, so if I was supposed to be squatting when I poop this whole time, maybe I wouldn’t have gotten such bad bowel problems…? Best not to think about it…

On to…

GIFT NO. 2 –  A Bidet!

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“Toitlet used water gun. It was super effective!”

Thought your porcelain throne was already a perfect spot for your private moments? WRONG. Prepare to step your toilet accessory game another level, friends. Stop using so much toilet paper, stop your friends from using so much toilet paper. Do you hate the earth? Stop that. Have a bidet squirt water at your butt. Not only will it make your butt nice and clean without having to do some major handywork down there, it is just civilized. Get your beloved Crohnie a bidet, put your pinky out, and get sophisticated.

GIFT NO. 3 – A Fitbit!

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“Aw, great. Someone else to tell me I’m being too lazy.”

Whether it’s to promote exercise that can help fight the sedentary depression that often washes over your pal, or to help them make those lifestyle changes they’ve been yammering on about, a Fitbit is a great way to have your wrist become your own personal coach. Now they can visually see a metric of just how much they are walking between their desk and the bathroom everyday! Great! Nothing like getting a notification on your phone saying you walked the entire distance of the city of Tokyo, entirely from bathroom trips! What a time to be alive!

GIFT NO. 4 – A Taco Bell Taco 12 Pack!

Lol. Just kidding this is a terrible gift idea. Friends don’t give friends with Inflammatory Bowel Disease Taco Bell. Be reasonable.

GIFT NO.5 – An Artificial Nano-bot Replacement Immune System!

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“Sweet, an immune system run by computers! Just like the rest of my life!”

Here it is. The best gift for you fiery gutted friend. This will solve ALL their problems. Just get a sophisticated community of nanobots that run a complex and highly-functioning multi-scale computational model of the human immune system and intestinal mucosa, replacing the need for all those dysfunctional immune cells they have. You just won the holidays! You can pick one up at Amazon for only the small pric-

Oh wait. These don’t exist. Drats.

All Jokes Aside:

Interested in giving an actual really great gift to the Crohn’s and Colitis community this holiday season? Donate to the Crohn’s and Colitis Foundation of America to honor your friends with IBD. Until December, 31st, all donations made to CCFA will be DOUBLED by the foundation to support double research and double the health programs. Thanks for reading!

Donate to CCFA here!

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.