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Crohn's and Pregnancy
crohn's disease, Uncategorized

Patient Behind the Plant: A Mother’s Story of Survival

When I sat down to interview Lauren Leiva, I knew right away that I was going to connect with her. We’re both Florida girls, yoga teachers, health advocates, and most importantly, we both have Crohn’s Disease.

Crohn's and Pregnancy

Our journeys couldn’t be more different, yet our struggles, fears, anxieties, and strengths are exactly the same.

This is Lauren’s story and she wants you to keep an open mind.

“I try not to judge others and what they don’t know,” said 34-year-old Lauren Leiva of Tampa, Florida.

Lauren has Crohn’s Disease and like we all know, there is no cure. The 1.6 million patients in the United States with Inflammatory Bowel Disease can only manage their symptoms, usually with risky medications.

“My Crohn’s was controlled, but not in a good way under all these medications. I was losing my hair, I got osteoporosis, I got pseudo rheumatoid arthritis,” said Lauren.

When she got pregnant for the second time in July of 2016, she was cautious. Her first pregnancy with her now 10-year-old son was difficult. Women with Crohn’s Disease have to be heavily monitored as they are usually considered high risk.

“I was told I could never have children with my severe Crohn’s because I was on all this biologic medication. When I got pregnant I took a chance and had my hope. And then my health declined.”

To see the full video of this story, visit my Facebook page

Crohn's and PregnancyShe was in the hospital for 9 months from July 2016 to April 2017. It was all haze for her because she was put on opioids during her pregnancy.

“Dilauded, morphine, oxy, Ambien, Benadryl. These are all the things they would prescribe me. It’s a vicious cycle of lying in bed taking pills.”

Lauren told herself that once she got out of the hospital, she would find another way. She consulted with Dr. David Berger, her 10-year-old son’s pediatrician and a doctor with Wholistic ReLeaf in Tampa, Florida. He prescribes medical cannabis to his patients which is an approved treatment for Crohn’s Disease in the state of Florida.

“There’s both long and short term benefits from it. So, from a pain perspective we know that the first dose out can bring reduction in pain because of how it calms down the nerves,” said Dr. Berger. “We also know in a longer picture, because of the way it maintains balance and homeostasis in the body, it also can serve as a longer term anti-inflammatory.”

Lauren’s pregnancy was taking a turn for the worse. Her doctors recommended she get an abortion or she and the baby could die.

“I just kept saying the baby is okay. I knew that no matter what pain I was in as long as the baby was OK, I can handle it,” said Lauren.

Miraculously, on September 5, 2016, a healthy baby boy named Alexander Joseph was born. Lauren’s health continued to decline. She was in and out of the hospital for six more months. Her doctor told her that this was her new normal: living on opioids with an unfixable disease.

“For me to hear that was just terrible because I wanted to go home with my family,” said Lauren as tears streamed down her face.” That’s the worst pain in my life when you’re burning alive. Feces just spilling out.”

Lauren eventually found a doctor at the Cleveland Clinic who was able to perform a life-changing colostomy surgery. But, she was put back on pain medicines while trying to be a mom to two young boys and getting her PhD in physical therapy. Finally, she decided to take Dr. Berger’s advice and started taking medical cannabis. Everything changed.

“Immediately it was the best thing ever. It helped me eat, digest, sleep wake up.”

Lauren was able to get off all of her pain medicines and use medical cannabis as a way to relieve pain, stress, and anxiety.

IMG_1992“Left and right I am having people reducing their inflammatory medicines for colitis. I have seen people who are significantly lowering their Valium and other Benzodiazepines and Prozacs and all other medications,” said Dr. Berger.

“It’s not like ‘That ‘70s Show’ where you’re like smoking a joint and laying on the couch eating. I am trying to be an advocate and pave the way that people who have scholarships and doctorate degrees also have conditions they might require medical marijuana,” said Lauren.

“There are occasional cases of addiction, but relative to the opiates, the benzos, relative to any street drug, alcohol, or nicotine, it has much less addictive potential than with all those other things. That’s part of what the re-education needs to happen. This isn’t cocaine. This isn’t LSD. This isn’t heroine. We’re taking care of really sick people,” said Dr. Berger.

IMG_2250Lauren is now on only two medicines. She takes Humira, a common biologic drug used to treat Crohn’s Disease, and medical cannabis. She’s a yoga teacher, personal trainer, nutrition specialist and most importantly, a mom.

“I feel blessed. Being able to have an open mind and do your own research and have faith; it can take you a long way. It’s not like [we’re] sitting at home getting high. [We’re] sitting home getting healthy.”

 

For resources on Crohn’s Disease and Ulcerative Colitis, visit Crohn’s & Colitis Foundation.

To join or donate to my Take Steps Walk for Crohn’s and Colitis team, click here.

xoxo Hilary

diary of a crohn's disease flare-up
crohn's disease, Yoga

My Crohn’s Disease Flare-Up Diary and the Lessons Learned

This last Crohn’s Disease flare-up was a monster. A painful and frightening monster that crept into my life and tried to swallow me whole. Could I have stopped it? The simple answer is no. Could I have taken steps in hindsight to have made the monster less scary? Absolutely. Let’s take a journey together through a severe Crohn’s Disease flare-up.

My Crohn’s Disease Diary 

January through May 2018: The Perfect Storm

I am getting my Remicade infusions every 8 weeks. Feeling great mentally, so I’ve decided to taper off my anxiety medicine called Buspirone. Also feeling great physically, so I am going to slowly start to incorporate gluten and sugar back into my diet. I am starting a rigorous yoga teacher training schedule while still waking up at 3 a.m. every weekday for work at the news station. I just got strep throat and have to go on an antibiotic. I am overwhelmed, cheating on my strict diet, and lying to myself about the onset of some gut symptoms. I believe I can treat this myself and it will all go away. 

May 2018: The Pre-Flare-Up

diary of a crohn's disease flare-up
I look so happy, right? This is when I am starting to feel symptoms, but I am ignoring them.

Yoga teacher training is over and I start teaching right away without any break. I am still waking up at 3 a.m. every weekday for work, but I am not myself. I am angry, judgmental, and ungrateful. I am eating lots of sugar and gluten. I am having mild to moderate gut pain now. I can’t treat this myself anymore. My doctor puts me on 9mg of Uceris, a steroid commonly used for Ulcerative Colitis patients. It’s working, but only for a few weeks. I find out the Remicade is metabolizing in my body too quickly, so there’s no medicine left in my body after a few weeks post-infusion.

June 2018: The Monster Reveals Itself

diary of a crohn's disease flare-up
I am on bed rest, but still smiling!

I feel out of touch with myself. I’ve overworked myself for months now. I am not eating properly, and the Uceris has stopped working. I go to work every morning in severe pain. I am talking on-air during the morning show and I want to crouch down and cry. People are starting to notice. I am bleeding from the gut and I cry to myself at home. I let it get out of hand. Where have I been these past few months? Why did I let it get this bad? I am on bed rest and can’t keep any food down. I have to take 2 weeks off work. My doctor puts me on 40mg of Prednisone and increases my Remicade dosage.

July 2018: A Fresh Start

I am sure you are seeing some major red flags in my diary so far. Maybe there were times you wanted to scream, “Hilary, for goodness sake, help yourself!” I don’t blame you. Here’s the good news: It’s July and I am feeling almost back to normal. I am tapering off the prednisone which did its job. I have also received the higher dose of Remicade which also seems to be working. I’ve gone back on a strict no grain and no sugar diet and have added a pharmacy of supplements with my meals every day. I am slowing down with work and yoga teaching, taking lots of breaks and self-love days, and filling my days with gratitude. The monster is almost completely gone and I feel better than new. diary of a crohn's disease flare-up

Lessons Learned

  1. You have a chronic condition that requires special attention and specific lifestyle requirements. Medicine is life-saving, but it only extends so far. You are responsible for taking care of yourself every day.
  2. When you start to feel symptoms, call your doctor. Do not try to heal yourself. There is no turmeric pill, no special diet, and no yoga practice that will get you out of a Crohn’s Disease flare-up once it begins. The symptoms will only get worse over time unless there is immediate medical attention.
  3. This isn’t your fault and don’t let anyone tell you otherwise. You could be doing everything right from diet to mental health, but your disease could flare-up. Your medicine could stop working. Crohn’s Disease is manageable, but tricky, and you are only human.
  4. You will get through this flare-up, one way or another. There will be times when you feel like you won’t ever come out of it. I am here to tell you that you will. Just hold on and keep fighting.
  5. Push your doctor. Be your own advocate at all times. If you feel symptoms, but your blood work is normal, keep pushing them to help you. If you need more explanations about medicines or treatment plans, don’t stop asking until you get your answers.
  6. You are whole. You are enough. This disease doesn’t define you.
  7. Allow yourself to heal and don’t feel guilty about this. Give yourself plenty of grace.
  8. Eat fresh foods and take your supplements. There is more research out than ever before about the power of diet and Crohn’s Disease.
  9. Let the people in your life know what is going on. They want to help you and you should accept their help. No one fights alone.
  10. You don’t have to pretend like you’re feeling good when you’re in pain. You are not an actor.
  11. Relationships can become strained when we are sick. This is natural and sometimes unavoidable. Find comfort knowing that those who truly love and respect you will stick around. Everyone else isn’t worthy of being in your beautiful life.
  12. Every single human is going through his or her own battle. Never look at others as if they are more blessed than you are. Yes, you have a chronic disease, but it is not the end of the world. In fact, you are living your best life despite this disease.the diary of a crohn's disease flare-up

What lessons have you learned during a Crohn’s Disease flare-up?

xoxo

Hilary Zalla

You may also be interested in: “5 Positive Affirmations to Get You Through a Crohn’s Disease Flare-Up” and “8 Yoga Poses For Bloating, Cramping, and Gas.”

crohn's disease, Uncategorized

5 Positive Affirmations To Get You Through A Crohn’s Disease Flare-Up

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Our minds like to play tricks on us when we’re going through a Crohn’s Disease flare-up. Every patient has their own irrational thoughts, but we all tend to reach the same conclusion: I am doomed and will never get better.

Let me start by noting that this form of thinking is very common, but people don’t talk about it. This is why it is easy to feel alone during a flare-up. While these thoughts may be common, it is also important to identify irrational thinking before it spirals out of control. Our minds can conjure up a whole island of negative feelings like guilt, anger, low confidence, helplessness, and anxiety. The goal is to stop these negative feelings before they take over.

When I am going through a flare-up, I get stuck in the same negative thinking each time. In order to stop myself from burrowing into a deep whole, I follow these 3 steps:

  1. Do a reality check by recalling your past flare-up experiences. Remind yourself how you got through the last one.
  2. Talk to someone, or multiple people, about how you are feeling. Allow your friends and family to remind you of your strength.
  3. Recite positive affirmations every day and/or each time you feel the negative thinking start to creep in.

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5 Positive Affirmations For A Crohn’s Disease Flare-Up

I am not a sick person. During flare-ups my mind conjures up images of me living in a hospital gown eating ice chips for the rest of my life. This irrational thinking is just that: irrational. I always heal from each flare-up and get back to normal life. You will do the same. The nature of a chronic illness like Crohn’s Disease is that flare-ups happen every so often. You are not a sick person. You are just sick right now.

This is not my fault. What did I eat? How stressed have I been? Am I taking all the right supplements? Every time I start to have Crohn’s Disease symptoms, I play the blame game. What did I do to make this happen? This thought process is dangerous. It causes guilt, anger, and self-loathing. Remember, you have a chronic auto-immune disease. Even if you did everything right, you could still have a flare-up because that is the nature of Crohn’s Disease.

I deserve love. Your mind will play so many tricks on your during a flare-up. It will say you are not good enough; your body is failing you; you would be better off alone so you don’t hurt anybody. These thoughts are irrational and simply not true. They stem from common flare-up feelings of low confidence and helplessness. It is important to remember these universal truths about yourself: You are healthy. You are whole. You are enough. Always and forever.

I am not a burden. It is vital to have a support system during a flare-up. You will need to lean on family and friends for emotional support, transportation, pharmacy runs, cooking, cleaning, and the list goes on and on. However, after one week of symptoms, I usually start to feel like I need to mask the pain with a smile so I don’t overwhelm my friends and family. Well, that is just silly! Your loved ones exist for these very times. They want to help you, so let them help you. If anyone makes you feel like a burden, they are not worthy enough to be in your life.

This too shall pass. It can be difficult to see the end of a Crohn’s Disease flare-up. You may start to feel like the pain is your new normal; you will never go back to your normal routine; you will never be able to eat your favorite foods again. This irrational thinking is usually the result of fear. It is important to do reality checks whenever you start to feel hopeless. Have you had a Crohn’s Disease flare-up before? Did you get through it? How long did it take? If this is your first flare-up, seek advice from someone who has been through it before. Remember, the symptoms are temporary. You will overcome this flare-up and get back to your normal routine.

For patient support, reach out to your local Crohn’s and Colitis Foundation chapter.

Related articles: 8 Yoga Poses for Bloating, Cramping, & Gas and How to Prepare for a Colonoscopy and What to Expect 

chocolate zucchini muffins
crohn's disease, Food, Uncategorized

Chocolate Zucchini Muffins

If you are trying to avoid nuts, dairy, grain and/or gluten, these muffins are for you! The chocolate-y delights are also a sweet option if you are looking to cut down on sugar. I am trying to avoid all of the above because I am having some Crohn’s Disease symptoms. In fact, I am writing this blog as I come off a 5-day liquid diet (I now fully understand the feeling of being “hangry”).

As always, there is a positive that comes out of every bout of inflammation. This current flare-up has encouraged me to take my gluten-free diet to the next level by also avoiding grain, starch, sugar, and processed foods. Yes, I am basically going to be eating like a cave man (Eh-em, cave woman). Even though I am already avoiding most processed foods, this is going to be a challenge. I love sugar, rice, potatoes, and tofu, all of which I will have to give up.

chocolate zucchini muffins

The chocolate zucchini muffins are my way of slowly learning to bake within the parameters of my new diet. This recipe comes from a cookbook called Against All Grain by Danielle Walker. The muffins have cacao powder and dairy-free chocolate chips, so they are not completely free of processed foods. However, it is a good start if you want to slowly start cutting out grain, gluten, and dairy. Baby steps.

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Chocolate Zucchini Muffins

This recipe is from Against All Grain by Danielle Walker.
SERVES: 1 dozen

PREP TIME: 15 mins

COOK TIME: 25 mins TOTAL TIME: 40 mins

INGREDIENTS:

  • 1 tablespoon coconut oil, for greasing
  • 3/4 cup zucchini, shredded
  • 4 large eggs
  • 1/2 cup maple syrup
  • 1/2 cup unsweetened applesauce
  • 1/3 cup coconut flour
  • 1/4 cup cacao powder
  • 3 tablespoons arrowroot powder
  • 1 1/2 teaspoons baking soda
  • 3/4 teaspoon ground cinnamon
  • 1/2 teaspoon ground nutmeg
  • 1/4 teaspoon sea salt
  • 1/2 cup dairy-free chocolate chips

INSTRUCTIONS:

  1. Preheat the oven to 350°F. Line a muffin tin with baking cups or grease with coconut oil.
  2. Place the shredded zucchini on a tray lined with a paper towel to drain some of the moisture while you prepare the batter.
  3. Place the eggs, maple syrup, and applesauce in the stand-mixer and mix on medium speed until combined.
  4. Add the coconut flour, cacao powder, arrowroot powder, baking soda, cinnamon, nutmeg, and sea salt and mix again on medium speed until combined.
  5. Wrap the paper towel around the zucchini and give it a light squeeze to remove excess moisture and fold it into the batter along with 1/4 cup of the chocolate chips.
  6. Divide the batter evenly among the muffin cups, filling each 2/3 of the way full. Sprinkle the remaining 1/4 cup of the chocolate chips on top. Bake for 22-25 minutes. Cool in the pan for 10 minutes, then on a wire rack until completely cool.

You may also be interested in “Less Lactose, More Probiotics: How to Make Homemade Yogurt” and “7 Indian Spices With Incredible Digestive Benefits.”

crohn's disease, Food, Uncategorized

Less Lactose, More Probiotics: How to Make Homemade Yogurt

Yogurt is one of the oldest foods known to man. Derived from milk, the creamy substance is packed with proteins, vitamins, minerals, amino acids, fats, and probiotics (live bacteria and yeasts that help keep your gut healthy). Without a doubt, yogurt is a super food for anyone with digestive issues. The problem is many of us with Inflammatory Bowel Disease can’t eat commercialized yogurt because of the presence of lactose. Even commercialized Greek yogurt that has been strained multiple times still has some lactose left in it.

Have no fear! You can make yogurt at home that is virtually lactose-free. It’s called “true yogurt” because the lactose is digested by the bacterial culture and further lactose digestion is not required by intestinal cells (Breaking the Vicious Cycle). This pure form of yogurt comes out tart and tasty. Homemade yogurt can be an extremely beneficial food to help heal inflammation associated with Crohn’s Disease and Ulcerative Colitis.

Making yogurt at home is super simple and requires only a few ingredients and products. The fermentation process takes 24 hours, so be sure you have the time before starting this recipe. In this blog I will be making the 24 Hour SCD™ yogurt. In just one cup of this yogurt, you’ll get 708 billion beneficial bacteria which is about 50 times more than a typical probiotic supplement.

Homemade Yogurt Ingredients

  1.  Whole milk, 2%, or skim. Whole milk makes the tastiest yogurt. If you’re on the SCD diet, you will need to get a 100% grass-fed, no grain milk.

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2. Large pot 

yogurt 2

3. Electric Yogurt Making Kit. This recipe calls for a Yogourmet kit which includes a yogurt maker, yogurt starter,  and thermometer. Any electric yogurt maker will work, though.

Homemade yogurt

How to Make Homemade Yogurt

This recipe comes from the book Breaking the Vicious Cycle by Elaine Gottschall. I encourage you to buy this book if you’re interested in learning about the Specific Carbohydrate Diet (SCD). This diet has shown to drastically reduce inflammation in the gut and improve the quality of life for Crohn’s Disease patients.

  1.  In a large pot, bring one quart (or liter) of milk to a simmer (180 F) and remove from heat. Stir often to prevent scorching and sticking.
  2. Cover and cool until milk reaches 120 F. You can speed up this process by placing the pot in ice water.
  3. Remove about one-half cup of cooled milk and mix in the yogurt starter powder to make a paste. Stir until there are no clumps.
  4. Mix the paste into the cooled milk and stir thoroughly.
  5. Pour the milk into the Yogourmet container and close the lid tightly.
  6. Fill the Yogourmet yogurt maker with water and place the closed container inside the yogurt maker. The water should come to just about an inch from the top of the yogurt maker once the container is placed inside.
  7. Make sure the yogurt maker is on and allow the fermentation process to begin! Set a timer for 24 hours. This time frame allows all lactose to be completely digested.
  8. After 24 hours, remove the container and place in the refrigerator for at least 6 hours.
  9. Scoop into a bowl and serve with honey drizzle or fresh fruit.

Yogurt-Honey-And-Lemon-Mask

The yogurt won’t be as thick as commercial yogurt because all the lactose has been digested by the bacteria. This yogurt should be much easier to digest for IBD patients, however it isn’t for everyone. It is a good idea to experiment by eating just a spoonful of it to see how your gut reacts.

Enjoy!

Huge thank you to Michelle and John Burtch for teaching me this recipe and introducing me to the SCD diet.

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You may also be interested in: “5 Ways to Use Indian Digestive Spices in Your Kitchen” and “8 Yoga poses for Bloating, Cramping, and Gas.”

crohn's disease, Uncategorized

Pro-Golfer Hank Lebioda Talks Triumphs Despite Crohn’s Disease Diagnosis

Positive. Humble. Fearless. These three words perfectly describe 24-year-old Hank Lebioda, Web.Com tour professional golf player and Crohn’s Disease patient. When I interviewed him at Golf Fore Guts in Florida, I was so impressed by his outlook on living with a chronic disease. I couldn’t wait to share his story with my readers.

Lebioda was diagnosed with Crohn’s Disease in 2012 during his freshman year of college at Florida State University. Like many of us, he didn’t know much about the disease. One thing he did know was that he wanted to play golf.

hank 1

“I had three and a half years [in college] to test the waters. To see if I can actually play golf at a high enough level and make a living out of it. It was an adjustment,” said Lebioda.

He had a full team of people at the university helping him from a strength coach to a nutritionist. As Lebioda juggled treatment options, he continued traveling to golf tournaments.

“We would travel with a box of Ensure. We would go to restaurants that would be comfortable for me to eat at where I wouldn’t have issues on the course the next day. It even got to the point where I would map out the golf course and see where the closest bathrooms were,” said Lebioda.

hank 3We can all relate to this. We’ve all had to make adjustments in our daily lives as we deal with uncomfortable symptoms. As a news anchor, I use commercial breaks to go to the bathroom. I also work to keep my emotions in check. It is easy to get sucked into the competitiveness of my industry, but Crohn’s Disease helps keep me grounded. Lebioda also believes his diagnosis helps keep him humble. He remembers a specific tournament against the University of Florida where he stood out like a sore thumb.

Lebioda wears a purple ribbon on his cap while he plays at the Golf Fore Guts Tournament in Wesley Chapel, Florida.

“If you watch college golfers, they will be carrying their own bags. Well, I wasn’t allowed to do that and it was a little bit of an ego shock for me. But I said, ‘This is what I have to do’, and I ended up finishing 12th in my first event after I got back from my diagnosis. My assistant coach walked with me that entire tournament. I had a push cart and made a bathroom stop every 4-5 holes,” said Lebioda. His team ended up winning that event for the first time in 20 years.

After graduating from Florida State University, Lebioda joined the Web.Com Tour where he has been playing now for almost 2 years. He is using his platform to raise awareness about Crohn’s Disease and is now a spokesman for the Crohn’s and Colitis Foundation. Lebioda wants to show kids the power of being fearless.

“One thing my dad taught me growing up is that there are two options: You can be part of the solution or part of the problem. Was I going to go, ‘Oh woe is me. No one understands what I am going through. No one else my age is going through this.’ Or, was I going to say, ‘I could bring awareness and show people you don’t have to live within this boundary of Crohn’s. It’s not something that will hold me back,'” said Lebioda.

Lebioda posing with two young golfers at the Golf Fore Guts Tournament in Wesley Chapel, Florida.

We all have this choice to make everyday. When we wake up, we have to decide whether Crohn’s Disease is going to defeat us or motivate us to be better. I know it can be hard when we’re going through a flare-up; when the pain takes over and we just want it to all go away; when we think we’ve found the right medicine, but then the symptoms creep back in. I know it’s easy to feel defeated. But everyday we get the chance to fight back. We get the chance to be proactive, do something to help ourselves, and put it all into perspective.

“It’s something I can live through and show people it’s not the end of the world. You can be a high level professional athlete with this disease and it’s not something I am going to be afraid of. It’s possible to live with it and live a great life,” said Lebioda.

crohn's disease

Teen Golfer With Crohn’s Disease Inspires Young Athletes

When I was first introduced to 18-year-old Parker James, I forgot he had Crohn’s Disease. He and his mom were even visiting the news station for an interview about their golf tournament where they plan to raise $50,000 for the Crohn’s and Colitis Foundation, and yet somehow I still forgot. You might be thinking, well, Inflammatory Bowel Disease is an invisible illness and the symptoms can’t always be seen, but that’s not why I forgot. It also wasn’t a lack of sleep (I get up at 3 a.m. for work, so it’s a common assumption). I forgot Parker had Crohn’s Disease because as soon as he introduced himself to me, I saw incredible confidence and vigor. I saw ambition, drive, happiness and contentment. These were all things I didn’t have when I was 18-years-old. No, no, no. I was either in denial that I had Crohn’s Disease, angry at my body for not being as healthy as I needed it to be, or in so much pain during a flare-up that I had no energy to think at all.

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Parker is different. He is an honors student at renowned Saddlebrook Preparatory School in Wesley Chapel, Florida where he attends classes in the morning and trains at the Golf Academy in the afternoon. He is an avid surfer and plans to travel to Cyprus in the summer to ride the Mediterranean waves. He has traveled to over 30 countries and even lived in London, England for a few years. Parker plans to attend a college in California next year and major in Public Relations and Advertising. The most impressive trait of all, however, is his outlook on life with chronic illness.

After a few minutes of taking Parker and his mom around the newsroom before their interview, I remembered Parker has Crohn’s Disease. I find out he has Rheumatoid Arthritis, too. Needless to say, this sweet young man has already been through a lifetime of illness. He’s had flare-ups, debilitating pain, colonoscopies, mouth sores, trial and error with medicines, and the list goes on and on. Not only has Parker come to terms with his disease, he has learned to use it to fuel his passion for golf. He has melded his competitive and hardworking spirit with the humility and focus he has gained from Crohn’s Disease to become unstoppable.

Life Outside the Lights family, meet Parker James.

Parker multitasking on the couch at home: Getting his Remicade infusion while doing some work on the computer. Go Parker!

What’s it like being a teenager with Crohn’s Disease?

“It’s been kind of a roller coaster. It started when I was about 10-years-old and started off strong with lots of inflammation. It was tough to find out what medicine to use. I started with 6-MP and now I am on Remicade. Most kids are into the party scene and growing up I’ve had to stay away from all of that. That’s where going to a golf academy has really helped me stay on a good path.”

Yoga has really helped subdue my symptoms. Do you feel golf does the same?

“Everyone feels nerves and sometimes that upsets my stomach, but I feel that [golf] almost takes away other pains Crohn’s can bring. The nerves and focusing on golf and winning distracts my mind from the pain. I use golf to fuel me as a motivation. With Crohn’s, you can’t quit. Every day you are fighting. This compares to golf. [Crohn’s Disease] motivates me to rise and play better. With golf, no matter what day it is, you can shoot the best score of your life and still not be happy with it. I feel that Crohn’s has helped make me a better player and fighter.

Notice the purple ribbon on Parker’s golf bag.

Golf Fore Guts is the first golf tournament for the Crohn’s and Colitis Foundation in Tampa Bay. Tell us about it.

“Being a second semester senior and being almost done with school, my mom and I figured this would be the best time to work on this event. We decided to start this and it’s going to be a lot of fun. The event takes place at Saddlebrook Golf Academy [in Wesley Chapel, Florida]. We have an auction with items including a 2010 Phil Nicholson signed master’s flag, a signed football from a Tampa Bay Buccaneers player, Tampa Bay Rays tickets and Titleist clubs. Hank Lebiota, a Web.com PGA tour player, is coming. I am excited to have him. He has Crohn’s Disease and if he can do it, anyone can.”

image001You may not be on the PGA tour, but you are already such an inspiration to kids with Crohn’s Disease who want to play sports. What’s your message to them?

“I am glad that I have the opportunity to inspire younger kids to not let their illness or disease get them down especially with athletics. With athletes, your body is your everything. I want to let kids know that with a disease you can rise above it and play. I was raised in Coral Gables in Miami, Florida. The weather is perfect all the time so you can play sports every day. I played football, soccer, and lacrosse. I tried to not let Crohn’s defeat me and hold me back and that’s the message I want to give kids with illness or really anyone. Don’t let anything hold you back from your passions and dreams.”

What do you tell yourself when you’re going through a flare up, but still want to live your normal life?

“Actually I have a little saying I created: ‘I am better.’ I have it written on my golf glove right on the thumb with a purple ribbon. I have a purple ribbon on my bags, hats, and this purple bracelet I wear. ‘I am better.’

Parker and his mom, Sara James, are hosting Golf Fore Guts on Saturday, April 14 at Saddlebrook Resort & Spa in Wesley Chapel, Florida. They plan to raise $50,000 for the Crohn’s and Colitis Foundation. Please consider signing up or donating.

You may also be interested in: “I Want to Prove you Can Do Anything: Crohn’s Disease Diagnosis Transforms Young Girl” and “Fearing a Crohn’s Disease Flare-Up Clouds Our Reality.”