Thoughts From a “Crohnie” During the COVID-19 Crisis

Hoarding Beef Ramen, face masks, social distancing, and toilet paper! What do all these things have in common? These are a few of my favorite things.

ALSO COVID-19.

Amidst these CRAY times, guess who HAD to go to the hospital to get bloodwork done? Let me tell you, I did, and it was an eerie experience. Keep reading for more details on the apocalyptic adventure coming to a theater near you…just kidding. They are all closed. #socialD

AND

I will also go into why the COVID-19 virus is not only terrifying for the average bear, but why this pandemic is even more terrifying for the average “Crohnie.”

The COVID-19 Effect 

The story begins like this: I found myself starring in the global blockbuster tv show, COVID-19, when I entered the hospital for blood work. Just the walk into the hospital gave me the heebie jeebies (not the clinical term).

Upon entering, the hospital required you to sanitize your hands before entering. Like they had attendants standing at the dispensers with forced smiles to confirm that you had cleaned your hands.

Clean?

Typically this hospital is extremely inviting and packed with people. Beautiful architecture and natural light encourages a comfortable atmosphere. A piano player fills the lobby with etherial music. However, this time around, it was empty.

And silent.

The few people that were at the hospital all wore face masks and had gloves on. It felt like a hybrid between a CSI crime scene and the scene in Monsters Inc. where they are looking for children at the fear factory.

COVID-19! COVID-19!

What do Aliens and Bloodwork Have In Common?

Once I got through the intro to 28 Weeks later, I got into my appointment fairly quickly. The blood work was called a “Prometheus” test. This test determines how well my biologic medication, Stelara, is working in my body. And it immediately made me think of the mediocre Alien prequel: Prometheus.

*WARNING*
Do not watch this movie unless you want the above image embedded in your nightmares.

Now, I am someone who gets woozy when a needle is being plunged into my arm. The last thing I wanted to be thinking about is a disgusting, gut-bursting alien during the bloodletting process. “Needle-ess” to say, the experience was better than the movie Prometheus. Although, Crohn’s still makes you feel like a baby alien is about to burst from your insides.

So why all this bloodwork?

It’s possible for your body to develop an immunity to this type of medication. This means my body has the potential to view the medicine as an attack and seeks to build an immunity to it. Just when you think Crohn’s became simple, think again.

In the era of COVID-19, it is of the utmost importance that one has an Iron Man immune system. The most effective medications out there for Crohn’s, seek to suppress an overactive immune system. So, basically all biologic medications, like Stelara, are Thanos to your Iron Man immune system. You can see the dilemma.

I’m still waiting to hear back with the blood results. But so far, I am encouraged by Stelara. Upon starting the medication, my symptoms have improved tremendously. My symptoms have subsided and my fatigue gets better every day! I’m actually….*looking for some wood to knock on….* starting to feel like a healthy Brooke again. Learn more about how far I have come right here.

One Day at a Time

If you have gotten this far, then it is time for you to take a moment to wash your hands.

Furthermore, It was an encouraging visit to the hospital as I conquered my fear of blood work LIKE A BAWSSS. However, I can’t help but see my joy diminished by the current pandemic. For someone with a compromised immune system, what is the best way to proceed?

I am learning that it comes down to a few simple chores:

-Use Common sense. Or should I say, “Uncommon sense.” Don’t panic!

 -Take this seriously. Listen to our governing authorities for instructions regarding social distancing. Don’t use this time to go on a vacation and put others at risk. 

-Pray. Draw closer to our Creator. The COVID-19 is not outside God’s control.

Colossians 1:16-17.

-And last but not least…

Check out this great article that answers a lot of important questions regarding COVID-19 and Crohn’s.

For those with compromised immune systems, take heart! This is only temporary. If the anxiety is crippling, some of my favorite coping skills involve staying busy. I love cleaning, cooking, baking, painting my nails, and watching Impractical Jokers.

Sal Vulcano from Impractical Jokers

What are some of your coping skills? Please feel free to reach out with any comments and questions you might have. Let us rise to the occasion in this time where the world needs encouragement!

-Brooke

The Magic Pill Myth and Importance of Holistic Living

magic pill myth and importance of holistic living

Have you ever heard of the magic pill? It is the pill your primary care physician prescribes to heal all ailments super fast. However, just like the cure-all tonics of old, the magic pill doesn’t solve the problem, especially an incurable one like Crohn’s.

Hear me out, I don’t want to blame the field of medicine or doctors for this. Sadly, it is our culture that begs for the painless, “easy” route. However, with Crohn’s disease, there is no magic pill and so far I have found the most success in holistic living. Let’s begin with discussing the holistic living.

What is Holistic Living?

When I first heard the phrase, “holistic living”, I had an image of a hippie/yogi, who only relies on the “vibes of nature” to maintain a healthy life. However, holistic living really is a simple term: treatment of the whole person, taking into account mental and social factors, rather than just the symptoms of a disease.

For example, do you have an upset stomach? Instead of just downing the pepto, holistic living considers additional factors to solve the problem long term. What did you eat that day? Are you deficient in any vitamins or minerals? Was your day more stressful than usual? Or consider anxiety. Sure, antidepressants come in handy for chemical imbalances in the brain. But holistic living also considers the following: are your living conditions triggering your symptoms? Besides medication, anxiety can also be combated with exercise, herbal supplements, counseling and sleep patterns. Boom! Holistic living!

Lack of holistic treatment is not entirely the doctors fault, but more so our culture – who is screaming for a magic pill. Our culture is lazy. I am lazy. We crave a quick fix. There are pills that quickly aid a burning gut: Anything to ease the pain and allow us to continue our binge of the Mandalorian. 

After months of my doctors just pushing pill bottles in my face, I began to wonder…what does a healthy gut look like? Feel like? And how do I nurture a healthy digestive system? 

How To Live Holistically

Surely what we put in our bodies greatly impacts our health. Every time I went to the doctor, they would gently nudge a healthy diet with the statement, “You should eat greens and healthy foods.” This is what I grew up listening to. Other than celiac, there was never a curiosity of food sensitivities. Once again, I believe this is due to the laziness in our culture. Everybody wants to eat what they want to eat and they don’t want to hear a doctor say otherwise.

It wasn’t until I met Dr. Holly in July 2019 where I began to open my eyes. She was painted as more of a holistic doctor.  At that point in my dark season, I would have settled for Yzma from Emperor’s New Groove.

Being a llama sounded a lot less painful.

I was desperate for answers and relief. Dr. Holly immediately wanted to discuss my diet and get me on the supplements/vitamins my body desperately needed, while also encouraging long term medication. She asked questions about my entire digestive health history AND my stress levels. She did blood work and stool samples to gather an accurate picture of what my body was going through. Dr. Holly addressed the issue at its root and did not just prescribe temporary relief. Finally, someone who was speaking my language! She was proactive, genuine, and she listened to me intently. 

After meeting with her, I began to note a difference in care from my GI. From my GI, I sensed an ambivalence to the power of a healthy diet and proper vitamin supplementation. I noticed a general lack of concern for my overall health.

Finally – A “Diet” Trend I Agree With!

Your entire life is made up of experiences. In this experience, I learned to listen to my body. You are the only person that knows you best!

For example, I kept a food journal for several months and researched foods to both include and avoid. I evaluated the stressors in my life and created healthier boundaries. I have created daily habits that focus on combating my Crohn’s. Holistic living with Crohn’s is possible! Learn more about how to get started here.

NOTE: My intention with this post is not to undermine the power and effect of modern medicine. I believe science has come so far in the treatment of irritable bowel disease. I don’t know where I would be without my long term medication, Stelara. However, I do believe there should be an active participation from the patient, regardless of medication given. With Crohn’s you MUST gain a deeper understanding of your body and what you are putting in it! 

I will conclude with this: my diet and lifestyle choices are a work in progress and I plan to post more about it in the future. Please add any thoughts, ideas, or llama jokes in the comment section below.

Behind Closed Doors

life with an invisible illness

Irritable Bowel Disease, like Crohn’s, is only one of numerous invisible illnesses. I would venture to say that most, if not all people, are living with an invisible illness. In 2019, NBA star Kevin Love opened up regarding his struggle with severe anxiety with his article, “Everyone is Going Through Something” One of my favorite actresses, Sarah Hyland, often shares information regarding her experience with kidney displasia and endometriosis.

Sarah Hyland on Chronic Health Issues and Suicidal Thoughts

 Whether it is mental, physical, or spiritual, most people experience a daily struggle that others can not see with the naked eye. 

Chronic pain, worry, fatigue often go unnoticed to others. But to the person struggling, it can be like a voice in your head that won’t stop screaming. Living with an invisible illness affects every part of your life and can cause major frustration in interpersonal relationships. However, there is hope to achieving a healthy quality of life!

Living with an Invisible Illness

When I set my mind to something, you best believe I am going to achieve it. Back in 2017, I dove into a new career and I thought nothing could stop me. I was achieving my quarterly goals and kicking names and taking ass! The dark side of the force could not stop me.

Avengers: Infinity War

Then I started getting sick and it made every aspect of my life a challenge. For example, I was encouraged to suck it up at work. I was a young girl that  had to learn to roll with the punches in order to build a thick skin. During the busy season, we know everyone struggles with fatigue and stress.

“Just survive until the slow season” was my mantra.

I lived in the Washington DC area, the hustle and bustle capital of America. The city rewards sleepless nights and sacrificed family time. Go-getters surround you. It’s an area ripe with a move it or lose it mentality. One misstep and a hundred millennials would pile in to take your place. The wedding industry is a beast of its own, but add environmental hustle and you got Godzilla. 

The Devil Wears Prada

Environment and work struggles were just the beginning. Creating and maintaining relationships proved to be another beast altogether. Malabsorption and no food left me with zero energy to give to my friendships. All I wanted to do in my spare time was be alone. This was unlike me. In college, I was hardly an introvert. I began to wonder what was wrong with me. The friends I did have did not fully understand what was going on and could not accept the explanation I was giving them. I couldn’t accept my own explanation. Living with an invisible illness “came in like a wrecking ball.”

This lifeless disconnection with others trickled down into my marriage. My husband confessed that he missed my former self. He claimed that I was just a shell of the former Brooke he had married. At first, these statements were harder pills to swallow than any of the horse pill supplements I was taking. After awhile, I didn’t blame him. He was right. My value as his wife was shot and I felt paralyzed to change anything.

God, Where Are Ya Bro?

I would ask God for relief. I would ask God to alleviate the symptoms. I asked God to heal me. I asked God to complete a supernatural work in my body. After about a year of what seemed like silence, I began to grow bitter. I began to entertain the idea that I was being Catfished by God. Nev, the host of the show, would look up “God’s” address and find a little man dwelling in his mother’s basement making promises He couldn’t keep.

Catfish: The TV Show.
One of my favorite things to watch!

If God “worked all things for good for those who love Him,” how was any of this good? (Romans 8:28) How was my condition helping anyone? It strained my marriage, stunted my advancement in work, and frustrated the literal crap out of me. 

I can now look back and say God was working. I may not have seen it in the moment, but looking back, He never left me. He taught me some valuable lessons, as shown below.

Hope for the Future

Coming to grips with the reality you are living with an invisible illness can be daunting. However, there is hope to improve your relationships and achieve a healthier quality of life. IN 3 EASY STEPS…jk none of this is easy. Keep reading.

  • Not everyone will understand. And that’s okay! I struggled with this truth for awhile. It often created tension in my marriage because I felt like my own husband “didn’t understand me.” At the end of the day, he doesn’t have Crohn’s disease. He will never understand. And that’s okay. But the one thing that matters to me? Empathy. He desires to understand my struggle and help the best way he can. This requires communication and patience from both of us. With that said, take time to have this transparent conversation with your loved ones. Learn to accept that they may not fully understand. Work to communicate healthy expectations from one another. 

  • Be realistic with your personal goals. At one point in my life, I was capable of running a half marathon and averaging 10,000 steps a day. I. WAS. FIT. Nowadays? I’m lucky to go on a short walk with my corgi, Scarlett, without getting winded. My body  just went through a battle scene worthy of the Oscar nominated war movie, 1917. Starting small, like adding yoga to your weekly routine, or increasing the length of a daily walk are baby steps if you are interested in having a more active lifestyle. Or not. Since my diagnosis and weight loss, being active isn’t at the top of my priority list. And that’s okay too!
Actual footage of food going through my colon
  • Remember that everyone struggles. It’s easy to enter a “woe is me” mindset, especially living with an invisible illness. However, we are all struggling with something. I’ve found it soothing to my soul to find opportunities to serve others around me. It gets me out of my head and focused on God’s work. Any act of kindness, no matter how small, can make a lasting impact! 

(Bonus: Find your support group – more to come on this topic when I discuss my first time attending a Crohn’s support group!)

Just starting out on your invisible illness journey? To get started, Click here. What is your invisible struggle? Please feel free to share your experience in the comment section below! 

The Silver Lining

the silver lining of irritable bowel disease

In a small part of my heart, I have joy for my irritable bowel disease.

Radical thinking, I know. Bear with me. 

It’s a small little compartment, but it’s there. Romans 8:28 says that God works all things together for the good of those who love him, who have been called according to His purpose. 

As a child of God, I get to live with the awesome reality that my life is perfectly written: the ultimate cinematic feature with its own twists and turns. In any great film, typically the protagonist encounters a trial of some sort. We, as the audience, embrace their conflict because it draws us into a relatable character and provides a compelling story in which we hope for the best in the end. 

The cool part about my story? It’s not really my story at all, but about just how freaking awesome God is at redeeming the scariest plot twists of our own cinematic features. Learn more about my Crohn’s story here.

What Started It All

Furthermore, self discipline has been a personal prayer of mine since I entered college. It was during my  senior year that I slowly faded back into some bad habits. World War Lazy had begun. The snooze button became the bane of my existence. Procrastination crept into all of my assignments like a weed. Every time I tried to overcome it or destroy it at the root, procrastination would pop up somewhere else. I. was. lazy. 

My prayer has remained unchanged since graduation, “Lord, help me to be more self-disciplined. I yearn to take better care of myself and to have a well balanced life.” 

As the responsibilities grew and life continued, my anthem prayer became louder. Adulthood was knocking at the door. Any sort of accountability I had at college was now gone. It was time to let adulthood in and face it head on.

And Then I Failed. Miserably.

I really did try! Just like all of my attempts to do a push up. I tried to push the earth away, but the earth refused to relinquish its grasp on my body.  I would just lay on the floor face down. A stubborn and proud mess. I genuinely thought I could take on the world and adult like a champ. After running into the wall countless times, bitterness towards God began to sink in. I shut Him out for a time. The fellowship with my Savior began to dwindle along with my self discipline. The illusion of control held firmly in my grasp. 

“Lord, help me to be more self disciplined.”

Little did I know, God would answer that prayer by way of a chronic and incurable illness. Irritable bowel disease at it’s finest. Move over, Job. 

Serious symptoms began to pop up all over my body. These symptoms instilled a lot of fear in me. This fear began to weaken my supposedly firm grasp on control. God was slowly breaking down the walls of my pride. I found myself sobbing on the bathroom floor during the darkest hour. All the control I had on my life slipping through my fingers.

Moving Forward

I began to question the alternative. “Do I continue on this fools errand for control?” or “Do I relinquish my life, truly, genuinely, into the hands of my Creator?” Jesus commands us to perform the latter in Matthew 16:24. It was at that moment that I sought to deny myself control over my life. This is the complete opposite of what our culture teaches us.

I started to seek him more earnestly and with desperation. Therefore, Crohn’s strengthened my relationship with God as I began to lean on Him when I had nothing left. Through the pain, He was showing His faithfulness, pursuit, unconditional love for me.

Not only that, Crohn’s forced me to change my lifestyle for the better. I now have to be aware of everything I eat. I keep a food journal handy and plan my meals. It forced me to give up foods and habits I wanted to remove from my life for awhile. It challenged me in ways I never would have encountered otherwise. I had to start taking supplements and vitamins. Food is now a fuel/medicine, not just means of satisfying a craving.

I now have a better understanding of my body that a lot of other 24 year olds don’t possess. God has granted me wisdom about how to best take care of my body. I now have a deeper appreciation for how God designed my body to take on my irritable bowel disease like a BOSS.

How often do we view our bodies as temples and to be aware of everything we put inside them? Valuing one’s body is clearly an important topic for me so you will definitely see more posts on the topic.

The Good, The Bad, and the Ugly

Now don’t get me wrong, I’m a work in progress. I still have really tough days where peanut butter m&m’s and Velveeta cheese packets cloud my judgment. 

And there are still some days where the abdominal pain screams louder than the progress. But overall, I’ve come a long way in my self care journey and in my relationship with God. 

All thanks to Him, who can redeem even the poopiest of stories …pun intended.

Is there a part of your life that God has redeemed? Are there any aspects of your life you would consider blessings in disguise? What are your peanut butter m&ms? I would love to hear your stories in the comment section!

An Incurable Disease. “So Be It.” Now What?

I’ll never forget the feeling of waking up from my colonoscopy and receiving the news. I thought a camera up my butt sounded bad. Diagnosed with an incurable disease sounded even worse.

Even though it scared the living daylights out of me, receiving  the diagnosis gave me a wave of relief. Sure, I was just told that my digestive system joined the dark side, but I finally had answers to my chronic pain and hope towards healing. 

Getting diagnosed can be scary and a bit overwhelming. It is important to know what questions to ask your doctors and what the next steps are in the process. So where do we start?

Short term relief. Immediately my GI doctor prescribed a steroid called Prednisone. I was to take this medication in decreasing doses over an 8 week period. This “grenade” provided relief almost instantly. Steroids are commonly used to combat the inflammation caused by Crohn’s. However, they are discouraged as a long term medication due to various negative side effects.  Side effects can include insomnia, depression, weight gain and overall just feeling a bit weird. I am so thankful for what it has done for me, but I looked forward to moving on to something more substantial and effective long term.

Long term medication. What is the bridge between the prednisone and long term medication? Discuss this question with your GI doctor. I was diagnosed with moderate to severe Crohn’s and the medication Stelara was recommended. Now I have done my research and there are several medications out there to treat irritable bowel disease. Just turn on the TV and you are guaranteed at least one commercial promoting a Crohn’s medication. Stelara is one of the newer medications and has shown promising results. I’ve been told Crohn’s affects everyone differently – so the right medication may vary for you!

I must say, it was new to me how Stelara is administered. I had to receive an initial infusion (yes, it involved a scary needle and IV in my arm over a 3 hour period). This infusion is similar to that of a cancer patient receiving chemo. After the initial infusion, I will need to be given injections once every 8 weeks. I will never complain about horse pills again. I would rather take a pill every day than give myself an injection.

Diet. Diet. Diet. I can’t stress this enough as it’s really important, not only to people with IBDs, but the public in general!  Dieting is one of the hardest aspects of this disease for me. Kraft Mac and cheese and ramen noodles are my JAM! Crohn’s has altered the way foods affect me. Sadly, gluten can no longer be a part of my life as it triggers my symptoms.

Thank GOD I like gluten free pasta!

It’s vital to start tracking what you eat and discovering what foods to include or what foods to avoid. Starting a food diary can be helpful (yes, it feels like a pain at times – but so worth it!). I’ve learned so much about inflammatory diets and Crohn’s super foods from my own research. No matter what you read out there, keep in mind that everyone is different. This is where monitoring your symptoms up to 72 hours after eating is so important. Gluten doesn’t upset my stomach right away, but you can bet that I will be enjoying the next day at the porcelain theme park. What are your trigger foods?

Supplements! Damaged intestines prevent your body from properly absorbing vital vitamins and nutrients. Prior to my colonoscopy, I had blood work done. The lab results revealed my inflammation levels as well as deficiencies. I was lacking vitamin D and B12. I was also suffering from a bout of iron deficiency anemia. There are even supplements that strategically combat inflammation such as fish oil. Talk to your doctor to see what they recommend as well as the best place to purchase your supplements. I won’t get into the quality of a supplement, I will merely suggest that you extensively read the reviews of supplements before buying. 

To stress or not to stress? Evaluate stressors in your life. This was huge for me. Stress from my vocation greatly altered my well being. I wish I could begin to understand the complexities of the gut and its connection to the brain, but all I can tell you is that the connection is real. Now, you may not be able to quit your job and move to a rural area like I did (talk about a major life change!), but removing those stressors have been life saving. As I seek a new career path, I will be committing to the limits and boundaries of my body. If a career change isn’t in the cards for you, I strongly recommend evaluating your priorities and finding ways to cope with stress in a way that promotes healthy living. 

AVENGERS ASSEMBLE.  It is time to call in the squad.  Having a support team as you navigate your illness and seek remission is huge. Yes, Crohn’s symptoms can be really embarrassing at times, but I’ve been pleasantly surprised by the encouragement I have received from opening up about my condition. I have met a lot of people who don’t mind talking about my bowel movements! Facebook groups, local support groups, church, etc. Encouragement is key. Having a chronic illness comes with good days and bad days. Reach out to people on those good and bad days.

Probably the biggest hurdle for Jordan and I was trying to understand my chronic fatigue. I always felt like crap. Along with severe pain during my flare-ups (The pain literally feels like someone stabbing you in the gut), I also experience low energy and I never want to go out. In a flare-up, my biggest priority is staying near a toilet and napping to my heart’s content. Now imagine living with someone like that? Poor Jordan! However, having him empathize with me, and not get frustrated, was a salve to my wounded mental state. He’s also been helpful as I alter my diet. He willingly gave up his comfort foods and jumped on the same diet as me. Surrounded by accountability and encouragement got me through some dark days.  

Patience! When I was told it can take 12-24 MONTHS for the digestive tract to fully heal, I about flipped a table in frustration. Are you serious?!

I CAN’T WAIT THAT LONG!

Achieving remission is a work in progress. Be patient with your body. You will have really great days where you feel you can take on the world. Others…well, not so much.

In my case, I was undiagnosed with Crohn’s symptoms for over a year. In that time, my body ran a constant marathon it was not equipped for. It’s going to take more than a “30 day diet detox” for my body to recuperate from that year. I am slowly accepting this process because I am confident I am going to survive this. Give your medication time to work. Use this time to learn about your body and adopt a lifestyle that will help you maintain remission. And I promise, you will begin to see results!