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.”

Mind Body Spring Cleaning
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Mind-Body Spring Cleaning: Cleanse the Body and Mind

I absolutely love springtime. When I was younger, it meant summer break was just around the corner. As an adult, it means spring cleaning. Families around the world take time to micro-clean their homes and purge their closets. They clean out their refrigerators and detail their cars. I hope you do all of these things, but the type of spring cleaning I am talking about doesn’t involve a toilet bowl cleaner and duster. This type of spring cleaning is much more interesting.

In nature, spring is a time for new beginnings and transformations. Flowers bloom, trees grow new leaves, mammals come out of hibernation, and new animals are born. As mammals,  it is only natural that we should go through some sort of transformation, too. This springtime, I invite you to join me in “mind-body spring cleaning.” Purging what no longer serves you and cultivating what you want to see grow.

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Mind-body spring cleaning could be anything from improving your diet to learning to quiet negative self-talk. Whatever you choose to clean up, make it something manageable. Self cleansing takes conscious effort and dedication, but it shouldn’t be stressful or overwhelming.

My 5 Favorite Mind-Body Spring Cleaning Ideas

mind and body spring cleaning1. Unfollow social media pages that don’t serve you. We spend over two hours on social media every day. Make that time nourishing and valuable. Consider unfollowing family, friends, influencers, or brand pages that don’t make you feel happy or good about yourself. Don’t let anyone make you feel bad about doing this. Protecting your peace on social media is vital for personal growth. You may not be ready to follow certain people and that is okay.

2. Learn to breath more. How often do you check in on your breath during the day? Start doing this and you’ll realize how often you are holding your breath or breathing high in the chest and shoulders. The breath is our life force and we need to be more aware of it. A steady breath can relive anxiety, stress, and nervousness. It can make us more attentive and energetic. Consider taking 5 minutes before bed to do breath work.

mind and body spring cleaning

Breath Exercise:  Sit in a comfortable seated position with your spine straight. Hands can lay comfortably in the lap or on the knees. Close your eyes and check in on your breath. What’s it like? Where are you breathing from? Now, set a timer for 5 minutes. Begin by inhaling on a count of 5, then exhaling on a count of 5. Extend the breath by a 1 count halfway through. You can take do this breath exercise any time during the day.  

capture3. Detox from sugar. I eat an obscene amount of sugar. Guys, I really need an intervention. Sugar in all its forms can worsen chronic disease like Crohn’s Disease, so I’ve got to make some changes. For this year’s spring cleaning, I am making a conscious decision to detox from sugar. This means avoiding artificial sugar, choosing the right carbs, eating more natural sugars from fruit and honey, and drinking more water with lemon (helps curb the cravings).

4.  Go to the spa. Give yourself permission to be pampered. We do not do this enough. A massage, steam room, sauna, or hot tub can do wonders for our mental health. Recently, I was feeling anxious and happened to be near a hot tub. As soon I got into the water my body relaxed which allowed my mind to calm down. A hot bath will do the same trick.

mind and body spring cleaning

5. Change up your exercise routine. What made you initially fall in love with your current workout? Are you still feeling that excitement about it or is it time to spice things up for a fresh start? Consider checking out a local yoga or pilates studio. Join a running or cycling group. I recently started lifting weights once a week and walking outside every evening, in addition to my daily yoga practice. Move your body in a different way and you’ll feel the incredible benefits.

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

Yoga Poses for Digestive Discomfort
Uncategorized, Yoga

8 Yoga Poses for Bloating, Cramping, and Gas

Yoga is a natural and easy way to relieve common PMS symptoms and digestive discomfort. I have been adding these eight poses into my daily flow to give love to my lower abdomen, lower back, and side body. I am used to dealing with PMS-related bloating and cramping. It is never comfortable, but at least it is predictable. What’s not so predictable is bloating, cramping, and gas from Crohn’s Disease. I was diagnosed 13 years ago and the sensations in my gut still come as a surprise to me. Usually the symptoms come after eating a big meal or dairy, but sometimes I feel digestive discomfort without any warning.

These eight poses have several benefits, but I am going to concentrate on how each eases bloating, cramping, and gas. I have labeled each of them with both the Sanskrit and English term.

The instruction for each pose is a rough explanation. I recommend taking a few yoga classes at a local studio to familiarize yourself with basic alignment and modifications. Also, most of the pictures shown illustrate a deep variation. Please know that your body may not be ready for some of these, so do not push yourself. These poses are not in any particular order and can be done within a vinyasa flow or as individual stretches. If you deal with any physical issues like lower back pain or knee pain, consult with a doctor before practicing. 

Bound Angle Pose

Yoga Poses for Digestive Discomfort

Instruction: Sit down. Bring soles of the feet together, knees open wide. Use your hands to open your feet out like a book. Elbows hug in towards lower belly. INHALE, prepare by straightening the spine. EXHALE, round forward encouraging head towards feet. Elbows can lightly massage abdominal organs.

Benefits: I love this pose! It stimulates the abdominal organs, improving the health of the ovaries, prostate gland, kidneys, and bladder. It’s my favorite pose for cramps. This pose also opens the lower back which can feel good if you get lower back cramps from PMS or Crohn’s Disease.

Supine Spinal Twist

pose 5

Instruction: Lay on back with feet planted. Hug knees into chest. INHALE, prepare. EXHALE, drop legs to one side, twisting the spine. Keep upper back and shoulders firmly planted. Hands can stretch out or come into a goal post position. Breath here for one minute on each side.

Benefits: I like to think of my digestive system as a wet towel in this pose. As I twist, it’s like I am wringing out my digestive system. This twist helps stimulate waste removal and gas. When you release the twist, fresh blood rushes back to your digestive organs which helps nourish them.

Wind-Relieving Pose

pose 9

Instruction: Lay on back with legs straight. INHALE, bend one knee toward chest and wrap hands around shin. EXHALE, prepare. INHALE, lift head towards knee. Hold for 5 breaths. EXHALE, release. Be sure to do both sides. You can also simple hug both knees into chest and just hang out while keeping head and shoulders down or rock forward and backward.

Benefits: Don’t be ashamed if you let out some gas. This pose massages the intestines and other organs in the abdomen. It really helps in digestion and the release of gas. I love this one!

Extended Triangle Pose

pose 2

Instruction: Stand with feet about 3 to 4 feet apart. Right foot comes to 90 degrees to front of mat. Left foot comes parallel to back of the mat and slightly turned in. INHALE, arms reach out wide, thumbs up, and gaze at left thumb. INHALE, reach towards right foot until you can’t reach anymore. EXHALE, bend from the hip. Right hand comes to thigh, shin, big toe, or block. Gaze up at left fingertips. Chest stays lifted. Hold for 5 breaths. REPEAT on left side.

Benefits: This is a powerful pose which stimulates the abdominal organs and improves digestion. I like it because it stretches my side body and strengthens my core which feels good when I am bloated or gassy.

Bow Pose

pose 1

Instruction: Lay flat on your belly with hands down by your sides. Bend your knees so that your feet are pointing towards the ceiling. INHALE, reach your hands back to grab ankles, big toes touching. EXHALE, prepare. INHALE, lift chest, knees, and thighs. Shoulders out of ears. Breath into your diaphragm and back of torso. Hold for 5 breaths.

Benefits: When you breathe here, you will encourage a gentle massaging of your internal organs. This can help digestion and move stuck wastes through the digestive system. I like to give my organs a nice massage here by rocking slightly forward and backward.

Upward-Facing Dog

pose 3Instruction: Lie prone on the floor, legs back, tops of feet on the floor. Bend your elbows so that palms of hands come beside floating ribs. INHALE, push hands into the floor (and slightly back as if you’re energetically pulling yourself forward), straighten arms (elbows facing forward) and simultaneously lift your torso, hips, and legs a few inches off the floor. Collar bone spreads and thighs engage. Hold for 5 breaths.

Benefits: This pose is a heart opener. The chest opens and collar bone spreads which can help with indigestion. This pose also stimulates the abdominal organs. You can feel a stretch right above your pubic bone which helps relieve cramping.

Bridge Pose

pose 6Instruction: Lay on your back with feet firmly planted. Arms come beside the body with hands reaching towards ankles. EXHALE, press feet and arms into the mat. INHALE, lift hips and slightly firm buttocks. Keep thighs and feet parallel. Clasp hands below pelvis as you stay on top of shoulders. No pressure in neck.

Benefits: This pose stimulates the abdominal organs which helps improve digestion and relieve PMS symptoms. It is really nice when you’re feeling bloated and gassy. This pose can also help relieve lower back cramping.

Seated Forward Fold

pose 7

Instruction: Come to a seated position with legs straight and feet flexed. Engage lower belly and keep spine straight with shoulders hugging down. INHALE, arms reach high. EXHALE, fold forward bringing peace fingers to big toes. I like to bend my knees here to encourage a flat back. Hold for 5 breaths.

Benefits: This pose is amazing for menstrual discomfort. The forward fold stimulates the liver, kidneys, ovaries, and uterus. It also helps improve digestion and can relieve gas.

You may also be interested in: “How Yoga Changed My Life.”

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5 Ways to Use Indian Digestive Spices in Your Kitchen

Indian spices have incredible digestive benefits. Many of them have been used medicinally in India for thousands of years. Today, Indian families across the world use these spices in almost every meal. People living with Inflammatory Bowel Disease or Irritable Bowel Syndrome can use these spices to assist with symptom relief and prevention.

Indian Healing Spices

From sprinkling the spices on fruit to adding them into tea, it is really easy to incorporate the spices into your daily routine. Here are some easy ways to use Indian digestive spices in your kitchen. By the way, all of these spices can be found at any grocery store.

Warm Turmeric Milk 

Recipe: One glass of milk with one tablespoon of turmeric powder. I like Starwest Botanicals Organic Turmeric Root Powder. Add a cinnamon stick for taste. Drink this before bed.

Benefits: Turmeric contains a compound called curcumin which has powerful medicinal benefits including anti-inflammatory effects.

                                                                                   Starfruit with Garam Masala 

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Recipe: Cut starfruit into half an inch pieces. Sprinkle a liberal amount of garam masala over top. I like to eat this as a snack during the day or dessert after dinner. So yummy!

Benefits: Starfruit comes from a tree native to India, but can be found in most grocery stores. It is packed with antioxidants and fiber. The fruit has a sweet taste and pairs perfectly with the sweet and spicy flavor of garam masala. This spice is commonly used in Ayurveda to improve digestive fire. It increases your body temperature which raises your metabolism and decreases constipation.

Masala Chai Tea 

Recipe: Here is my favorite recipe. It calls for the following spices: black peppercorn, ginger, cinnamon, cardamom, cloves and nutmeg. It tastes best with whole milk, so this is not the best option if you’re lactose intolerant or sensitive.

Benefits: Every spice in masala chai has individual health benefits. Overall, you are getting powerful anti-inflammatory effects, metabolism boost, natural pain relief, and bloating reduction.

A Handful of Fennel Seedsshutterstock_526104295

Recipe: Eat a handful of fennel seeds after each meal. It’s a common digestive in India. You can also try my favorite brand of fennel tea if the seeds are too strong for you.

Benefits: Fennel seeds can provide relief from constipation, diarrhea, indigestion, and flatulence. Fennel also has an amino acid called histidine that can help treat anemia. The seeds taste like black licorice and help cleanse the palate and curb cravings.

Tacos with Red Chili Powder 

Recipe: Any one of your favorite taco recipes! Sprinkle a small amount of red chili powder into your taco ingredients. A small amount goes a long way!

Benefits: Red chili powder can prevent acid reflux and kill bacteria that cause stomach ulcers. It also has a large amount of fiber which helps ease digestion and prevent constipation.

As you can see, Indian spices can be used in a variety of ways. A common misconception is that you can only use these spices in Indian food. On the contrary, the spices will work well in dishes you are already making in your kitchen. Experiment with these spices and see what you discover. I know one thing- you will be doing your digestive system a big favor.

Indian spices that aid digestion
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7 Indian Spices With Incredible Digestive Benefits

If you’ve eaten authentic Indian food, you know the dishes are packed with flavor. What you may not know is much of that flavor comes from spices that are beneficial to your digestion. These Indian spices can help people with digestive issues like Crohn’s Disease and Irritable Bowel Syndrome. The spices are used in Indian households around the world. They are versatile and can be used in all kinds of dishes. Sometimes I even like to take a spoonful of one and take it like a digestive supplement.

My spice rack is actually a spice box. It was given to me by a close Indian friend. She filled the containers with spices she uses everyday in her kitchen. I labeled them for you to make it easy to understand.

Indian Healing Spices

The Digestive Benefits of 7 Indian Spices

Turmeric is what gives curry the orange color. Turmeric contains a compound called curcumin which has powerful medicinal benefits including anti-inflammatory effects. Curcumin is such a strong anti-inflammatory, it matches the effectiveness of some anti-inflammatory drugs. Turmeric has a pungent, bitter flavor. Some common dishes where turmeric is used include curry, soup, salad dressing, vegetables, and tea. I use Starwest Botanicals Organic Turmeric Root Powder and take a daily spoonful of it with cracked pepper and honey. The cracked pepper helps with absorption and the honey makes it taste better.

Cumin is an herb that has been used in India for hundreds of years to treat indigestion. It can help relieve diarrhea, bowel spasms, gas, and stomach aches. The compounds in cumin stimulate digestive enzymes which can be beneficial to people with Irritable Bowel Syndrome. Cumin can be used as whole seed or ground. Some common dishes with cumin include curry, hummus, chili, meat, and fish. I like to take a handful of cumin seeds after a meal or with warm water.

Garam Masala is my favorite tasting spice in my box. It is a blend of spices native to India. A traditional recipe contains black peppercorns, cinnamon, cardamom, cloves, mace, and cumin. Garam masala is commonly used in Ayurveda to improve digestive fire. It increases your body temperature which raises your metabolism and decreases constipation. It is beneficial for people with slow transit constipation. I like to sprinkle it on starfruit. Trust me, it is delicious!

Ajwain and Fenugreek enhance the flavor of many Indian dishes as it tastes best when cooked. Fenugreek is commonly used in Ulcerative Colitis diet plans because of its anti-inflammatory effects. The seeds have water-soluble fiber which can help soothe an upset stomach, constipation, and inflammation in the stomach. Fenugreek can also increase your appetite which can be useful during an IBD flare-up. Ajwain can be a natural home remedy for curing gas, flatulence, acidity and indigestion. Boil water with a few scoops of ajwain seeds and drink up!

Mustard seeds are an excellent source of magnesium and dietary fiber, so it can help with constipation or irregular stools. Mustard seeds can also stimulate your appetite, soothe an upset stomach, and act as a laxative.  Be careful because too much of it can cause irritation. In Indian cooking, black mustard seeds are often fried in oil which makes them sweet and mild. The seeds are also used in Ayurveda healing.

Red chili powder is a big reason why Indian food is so spicy and why many Westerners  have to go the bathroom after eating. Even though people associate red chili powder with stomach aches, it actually can prevent acid reflux and kill bacteria that cause stomach ulcers. Red chili powder also has a large amount of fiber which helps ease digestion and prevents constipation. You can use this spice in many cuisines like Tex-Mex, Chinese, Indian, and Thai.

Sesame Seeds are derived from the oldest oilseed crop in the world and have been cultivated for more than 3,500 years. The seeds are packed with fiber which can help reduce constipation and diarrhea. There is also a lot of copper in sesame seeds which reduces inflammation and assists in the intake of iron. One of the most unique digestive benefits of sesame seeds is its oral effect. The oil in the seeds can act as an antibacterial in your mouth which helps maintain proper oral hygiene.

Not pictured in my spice box, but still included in my digestive arsenal…

herbal-tea2

Fennel seeds taste like black licorice and are one of my favorite digestive friends. The seeds can provide relief from constipation, diarrhea, indigestion, and flatulence. Fennel also has an amino acid called histidine that can help treat anemia. I am frequently low on iron from having Crohn’s Disease, so that is super helpful for me. Fennel seeds are used extensively in Indian cooking and as a post-meal digestive. I like to eat a handful of seeds after dinner. I also like to drink it in tea from. My favorite brand is Heather’s Tummy Tea Organic Fennel. 

Ginger and cardamom are also essential for gastrointestinal protection. These two plants are similar to turmeric and can help relieve inflammation, nausea, and pain. Ginger tea is one of my favorite drinks before or after a meal.

COMING UP ON THE BLOG…How to use 7 Indian spices in the kitchen! My favorite Indian foods and drinks with digestive benefits.

You may also be interested in “Why i Chose a Gluten-Free Life: A Crohn’s Disease Perspective” and “So You Want to Try Tempeh, Eh?”

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“I Want to Prove You Can Do Anything:” Crohn’s Disease Diagnosis Transforms Young Girl

11-year-old Katelyn Carter sits on the interview couch as she answers my questions about her Remicade infusions. Her sister, 8-year-old Alexis Carter, sits beside her.

Children with Crohn's Disease
Alexis on the right. Katelyn on the left.

“In my mind I’m screaming, ‘Get me out of school I need to be with her!’” says Alexis as she explains how she tries to accompany her sister to every infusion. Katelyn smiles down at her little sister with a grateful look in her eyes. It’s obvious these two have a special bond. They are a lot alike, too. Both girls are outgoing, confident, and well-spoken. Katelyn, Orlando native, wasn’t always this way, though. Less than two years ago, she was a different kid.

“I started to have stomach issues, and my stomach would start to hurt. I would have to constantly use the bathroom,” said Katelyn.

Michelle Carter, Katelyn’s mom, said her little girl was quiet and reserved. She considered getting her a counselor because she used to lie on the couch all day.

Top: Katelyn and Alexis. Bottom left: Samson the dog is a therapy dog who visits patients like Katelyn during procedures and infusions. Samson visits children at Arnold Palmer Children’s Hospital and pediatric GI offices in Orlando.

Doctors thought Katelyn was lactose intolerant. When a lactose-free diet didn’t improve her symptoms, doctors recommended a colonoscopy. In November 2016, just eight days after Katelyn’s 10th birthday, her life changed forever.

“The next day [after the colonoscopy] I ended up in the hospital because they said I had severe Crohn’s Disease and they needed to get fluids into me,” said Katelyn. “I had to have an MRE where you drank disgusting fluid, and so that stressed me out.”

capture 5

While Crohn’s Disease is more common in adults than children, between 5% and 25% of IBD cases are diagnosed during childhood or adolescence. Although the symptoms can be hard, many children report being grateful for the disease because it encourages personal growth.

“I now try to let people know that [Crohn’s Disease] happens, but it doesn’t stop you from anything,” said Katelyn.

“It’s almost brought her out of her shell. It’s a blessing and a curse, you know? I don’t want her to have it, but it’s made her who she is now,” said Michelle.

Katelyn has transformed into a confident and outgoing young lady. Her mission is to prove to her peers that Crohn’s Disease can be your biggest asset and your motivation to succeed; that you can use your chronic illness to make a difference. She started by planning a “Crohn’s Awareness Week” at her school last year where everyone wore purple and raised money for the Crohn’s & Colitis Foundation.

crohns awareness

“Crohn’s has made me do something because I want to prove you can do [anything] even if you have it,” said Katelyn. “When you think of something that’s uncured you think of cancer, but no one knows about Crohn’s and Colitis.”

Katelyn will represent her peers as the 2018 “Youth Honored Hero” at the Orlando Take Steps Walk for Crohn’s & Colitis.

Katelyn

Katelyn’s ability to let go of fear and use her disease to benefit herself and others is a lesson for us all.

Back on the interview couch, I ask Katelyn if she has anything else to add. This is when she looks over at her mom.

Katelyn does CrossFit, an exercise she wouldn’t have considered before her Crohn’s Disease diagnosis.

“Hey mommy, I have to ask you a question. What’s the word you use for ‘in the clear’?”

“Remission,” Michelle answers.

 

“Yeah…I’m in remission!” says Katelyn with a big smile on her face. Alexis, right by her side, performs jazz hands in excitement.

Donate to Katelyn’s Warriors.

 

 

 

You may also be interested in: “Crohn’s Disease 101: Everything the World Should Know” and “Why I am Grateful for Crohn’s Disease.”