Tag: #ulcerative colitis

New Daily Vlogs

A lot of people are interested to know whats it’s like living day-to-day with chronic disease–especially Crohn’s Disease, Arthritis, and Necrosis. I’ve created a YouTube channel where I share short updates about life with chronic disease–everything from doctor visits to general updates on how I’m feeling. I want the videos to be authentic as possible so everything is one-take with absolutely no editing or effects.

Let me know what you think about my Vlog, and if you have any questions you want answered about life with chronic disease.

Check it out here: Life With Crohn’s Disease Vlog

Thanks!

How To Beat Crohn’s Disease in Five Steps:

Five Steps to Beat Crohn’s Disease

  1. You Can’t Cure Crohn’s Disease- Unfortunately, Crohn’s disease is an incurable, chronic condition which means it really can’t be “beat”. However, you can manage your Crohn’s disease and put it into remission- remission is a state with little to no symptoms and it’s almost like being cured. If anyone tries to sell you a magical supplement, holistic treatment plan, special diet plan, etc., that will cure your Crohn’s disease you should run the other way! There are substances and supplements that can help alleviate symptoms and help your body heal, but they can’t cure I’ll write another post about my experiences with different supplements like Redmond’s Clay, Chinese healing oil, and etc.

 

  1. Manage Stress- Stress is a huge exacerbator of Crohn’s disease symptoms, and it’s one of the hardest things to manage. When you start having a flare up it’s all too easy to start worrying about missing school and work. On top of that, you can start to worry about paying for your medical bills. The stress of worrying about all of these things can worsen your symptoms and make it harder to recover. You can even be in remission and extreme stress can trigger a flare up! Finding strategies to manage your stress is crucial to beating Crohn’s Disease!

 

  1. Eat Healthy- When your body is dealing with Crohn’s disease it’s imperative that your body has the proper nutrition so that you can start to heal. It’s common to be anemic and malnourished when going through a Crohn’s disease flare-up which makes it even harder for you to start to get healthy again. Each person’s body reacts differently to different foods so it’s important to track what you eat and how your body reacts. It’s common for people with Crohn’s disease to generally have adverse side effects to raw vegetables, nuts, popcorn, etc.

 

  1. Get Exercise and Plenty of Rest- Getting exercise while experiencing a flare up is one of the hardest things—your body is exhausted, you have literally zero energy, and you are weaker than ever. However, simple exercise can help stimulate healing and help you recover faster, but be extra careful not to overdo it! Too much exercise while in flare up can exacerbate your flare-up. While it’s important to get exercise, it’s just as important to get plenty of rest! Your body can only start to heal when you are have plenty of rest. Many experts recommending getting at least 8-10 hours of sleep when you have a flare up.

 

  1. Follow Your Treatment Plan- It’s more than likely that your doctor will prescribe medications to help you manage your Crohn’s Disease. I can’t stress how important it is to follow the treatment plan your doctor recommends! If you have any concerns about your medications or dosage, talk to your doctor about it! Most of the time there are answers to your concerns if you just talk to your doctor about it. Never skip doses, or take more medication than prescribed without first talking with your doctor. Don’t forget your GI doctor has at least 14 years of schooling and experience—most of the time they know what they are doing!

 

Follow these 5 steps and hopefully before you know it you’ll find yourself in remission!

Exploring In Italy

I’ll be the first to admit that I’m a travel addict. There is nothing quite like the thrill of traveling to a new destination and experiencing something totally different! This past week I had the opportunity to fly to Rome and tour Italy. It was an amazing experience and definitely a trip of a lifetime.

My week started out in Rome, Italy, After flying into Leonardo da Vinci Airport in Fiumicino, a suburb of Rome, I quickly made my way up to Rome to check into my Airbnb and take a quick nap. It’s really important to take care of your body as much as possible when traveling, especially after flying for 15 hours! After resting up for a bit, it was time to explore!

I only had a couple of days in each city before moving on to the next one so my days were packed with activities. If you can name an attraction in Rome, I saw it! From the Vatican, to the Trevi Fountain, to the Colosseum, I saw it all! Rome Colosseum

Traveling with Chronic Disease can really take a toll on your body, especially when your days are long and packed with adventure. In order to combat fatigue and to make sure my body was being taken care of, I made sure to buy and drink lots of water whenever possible, ensure I was still taking all of  my medications and supplements and at the right times, and to make sure I ate as healthy as possible. Doing these relatively small things helped make sure my trip went as smoothly as possible!

After finishing in Rome, I took a high speed train to Venice. After exploring Venice it now makes sense to me why Marco Polo grew up to be an explorer! Venice is a beautiful city that is an absolute maze! Even the most savvy travelers get lost in Venice. Highlights of Venice included exploring the city by motorboat and visiting St. Mark’s Square. Venice is a city that everybody should visit at least once in their lifetime.Venice

Florence was the next city I visited by taking high speed train. Italy has an amazing network of high speed trains that are extremely easy and convenient to travel by. Florence in my opinion is the ‘hipster’ city of Italy. Florence is world-renowned for artwork and history. Visiting the Duomo and climbing the bell tower was a great way to get exercise and an amazing view of Florence!View of Florence

After Florence I made my way to Pisa again via high speed train. The train to Pisa is a quick 45 minute ride. I was so exhausted from exploring and jet lag, that I instantly fell asleep as soon as I sat down for the train ride. My nap was much needed, as I was able to actually go inside the Leaning Tower of Pisa and climb to the top! This was such a cool experience as the marble floors are worn from years of use, and you can really feel the tower lean as you climb to the top!Leaning Tower of Pisa

Naples was my next destination after visiting Pisa. I took a Frecciarossa high speed train that went 180 mph and got me to Naples in about three hours. Naples is a stunning coastal city that is close to Pompeii and the Amalfi Coast, both of which I was able to visit. It’s a little bit eerie and somber visiting the ruins at Pompeii. The Amalfi Coast which includes Positano, Sorrento, and Amalfi, to name a few cities, is absolutely beautiful! Positano

Sadly, it was time for me to return to Fiumicino for my flight home. I took another high speed train and arrived back in Fiumicino in about an hour. I’m a huge beach lover so of course I had to visit Ostia Beach. Unfortunately, it was still a little too cold to really enjoy the beach, but it was still fun to walk along the shore and listen to artists playing music on the pier. Ostia Beach

My flight home was definitely challenging. My first flight departing Rome was delayed due to a late crew member and a late incoming flight. Consequently my flight was delayed about an hour. This delay made me miss my connecting flight in Dulles Airport in Washington DC. If you haven’t seen the news, United and Delta had hundreds of cancelled flights and delays this past weekend which resulted in there being no available flights home. Instead of arriving home Friday night, United wanted to fly me home Sunday evening. I’ll share another blog piece on how I was able to get a flight home on Friday instead of Sunday.

Overall, I had an amazing experience exploring Italy. Italy is such a vibrant country with a rich history. If you get the opportunity you definitely need to check it out!

Dealing With Failures

Look, no one likes to focus on negative things, especially when it has to do with failure. Here’s the harsh reality of life–we all fail! Sooner or later it’s going to happen! Everyone fails at some point in their life, but how they react to failure tends to define who are they are.

Whether you fail trying out for sports, asking out your crush, or even for work, failing is nothing to be embarrassed and quit over. Look at Michael Jordan, who was cut from his sophomore, and then went on to be one of, if not the greatest NBA player in history. Okay, so what that’s an example regarding sports. What about real-life? Heard of Steve Jobs? He was fired from his own company after having a disagreement with the board about plans for future growth. I’m pretty sure some of you right now are reading this from an Apple device.

What sets apart amazing people like Michael Jordan and Steve Jobs was how they responded to failure. Instead of being too humiliated to try again, they learned what they did wrong and came back stronger than ever! Every last one of us can learn from our mistakes and failures and become better people!

If you fail, don’t give up. Keep pushing and trying and learn from your mistakes so you don’t make them again. You are smarter and better than you realize.

How I Lowered My Infusion Bill from $2,692 down to $5

Tips on using copay cards to lower your medical expenses.

Nothing is more stressful than opening a bill from the hospital and seeing that your life-saving infusion is going to cost $2,692 AFTER insurance—let’s just say it can cause a few gray hairs to come out of nowhere!

After trying Remicade (developed antibodies), Humira (body didn’t respond), Remicade again, Simponi (developed antibodies), I’m now taking Entyvio to which my body is responding very well to. I’ve been able to achieve clinical remission and I’m no longer steroid dependent. I’d say this is cause for celebration!

However, there is a downside—there are only two infusion centers in the state of Utah that currently provide Entyvio infusions and only one is covered by my insurance. The total for one infusion? $17,890.80. The average person on Entyvio requires eight infusions per year. That means over $143,126 in bills for one year for the average person on Entyvio. I hope you are making more money than I am, because there is no way the average person can come even close to affording $143,126 in hospital bills each year. Luckily, after insurance my bill is only $2,692.44 which isn’t horrible considering my max out-of-pocket is $9,000 for the year. $9,000 is still pretty steep, but it’s better than not having insurance.

What a lot of consumers don’t know is the majority of drug manufacturers provide financial assistance. For example, Entyvio offers Entvyio Connect, Entyvio’s Financial Assistance program, which limits caps the drug price to the consumer to only $5 per dose. My explanation of benefits from my insurance, which breaks down the hospital bill into line items and explains how much the insurance company will cover, shows that the pre-infusion medication of Benadryl and IV Steroid cost $139, IV Supplies cost $537, Laboratory Work $149.80, and Entyvio Drug expense of $17,065. My insurance covered all of the pre-infusion medication, laboratory work, majority of the Entyvio drug expense leaving me with a bill of $2,692.44.

Since I’m enrolled in the Entyvio Connect program my bill has been further reduced to just $5! That’s a savings of over 99% off my original bill with and without insurance. It really does a make difference using a co-pay card like the Entyvio Connect program to help lower your medical expenses. If you are taking a medication it is worth checking to see if the drug manufacturer offers a financial assistance program. These programs can help you save some serious money over the long-run.

Let me know your favorite ways to help lower your medical bills! Good luck and take care of your health!

A Beach A Day, Keeps The Doctor Away

Sometimes a day at the beach is just what the doctor ordered. Seriously. Multiple studies in both the US and Europe have linked exposure to sunshine to lessen your chance of developing IBD. For those already with IBD, exposure to sunshine can help relieve your symptoms. Study #1 Study #2

aruba-eagle-beach
Eagle Beach, Aruba. Enjoying some unbelievable beaches and waverunning!

With that in mind, I had the pleasure of spending last week in the Caribbean aboard the beautiful Carnival Vista visiting Grand Turk, Dominican Republic, Curacao, and Aruba. Long days loaded with sand and the sun is exactly what the doctor ordered for me! It’s surprising to notice multiple health benefits ranging from not noticing my arthritic ankles to enjoying more energy.

carnival-vista
Carnival Vista docked next Holland America Eurodam in Grand Turk

The combination of the stress free week, thanks to the wonderful crew and staff of the Carnival Vista, and plenty of sunshine in the warm Southern Caribbean is exactly what my body needed during a very cold and snowy winter in Utah. If you read the studies linked above, you should now know that sunshine is the best form of Vitamin D, and if you are lacking Vitamin D it can cause IBD or make your symptoms worse if you already have it.

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South Beach, Miami Beach

Always talk to your doctor about the best way you can increase your Vitamin D levels and make sure your skin is protected! It’s very, very important to remember to always protect your body while enjoying the sunshine. Make sure to use sunscreen and wear protective clothing. Skin damage just isn’t worth it!

If you’re feeling the winter blues and need an escape, a sunny vacation may be just what you need! Let me know your favorite vacations to catch some sunshine!

Moving Forward—Life with Chronic Disease

Moving Forward–Reflecting on life with Crohn’s for eight years.

The devastation, shock, and confusion of being told you have an incurable, potentially life-threatening disease is hard to describe. It’s easy to feel as the world you once knew has collapsed around you. Multiply that feeling by 3x or 4x for each time you are diagnosed with another chronic disease and it’s easy to feel overwhelmed and powerless.

It’s been eight years since my initial diagnoses with Crohn’s Disease and Arthritis. Unfortunately, I had symptoms for many years before I was diagnosed, which lead to extensive damage to my digestive tract and body. Left untreated the disease in my body created a toxic-megacolon, a severe complication of IBD which causes the intestines to rapidly expand, while I was away on vacation. I had to be rescued by the Coast Guard off of a cruise ship, and spend three weeks in the Miami Children’s Hospital before being stable enough to fly home and spend three months recovering at Primary Children’s Hospital before being released. (More on this story in another blog post coming soon J)

During this time my life changed forever—I lost an extreme amount of weight, I developed severe avascular necrosis in my ankles due to heavy steroid usage, but more importantly I learned the road to remission is an ever-going battle and that positivity can make all of the difference in the world. Leaving the hospital, I looked and felt less than ideal, but I knew things could get better—and things did get better!

Severe weight loss due to IBD
Finally healthy enough to leave the hospital!

It’s been eight long years, but I’m so grateful to say that I live an almost ‘normal’ (no one has a normal life) life now. I’ve achieved remission in both Crohn’s Disease and Arthritis with the help of my amazing doctors and nurses. I’m able to work and contribute to society, I can travel wherever I want to, I can try new foods, and most important of all I can enjoy life.

I’m not saying it’s easy to live with chronic disease, but it is definitely worth it to keep a positive attitude and outlook on life. I know there will be some days where everything will just seem to go wrong. However, just keep on pushing and staying positive and hopefully before you know it, things will start improving slowly but surely.

It’s hard to believe how much your body can change in just a couple of years. Looking back it seems impossible that my body could be in the condition it is today. Don’t get discouraged in your fight against chronic disease. Keep believing and stay optimistic—you might be surprised by just how much it can really help! I hope everyone can keep moving forward in their fight against chronic disease and live as healthy and happy as possible!

What You Don’t Know About Me – Life With Invisible Illness

Life With Invisible Illness–What You Don’t Know

What you probably see when you look at me is a normal, healthy 24 year-old. What you probably don’t see is someone living with multiple chronic diseases. When I was 16 years old I was diagnosed with Crohn’s Disease and Arthritis, and shortly after diagnosed with Avascular Necrosis. These conditions can be life-threatening and have a severe impact on quality of life.

While I’m lucky to currently be in remission from Crohn’s Disease and Arthritis (for the most part) and be able to manage my Avascular Necrosis symptoms, I used to be very, very ill. During this time I realized the majority of people could only see me from the outside, and couldn’t see the battle raging inside my body. Here’s what you didn’t know about life with multiple chronic diseases:

Every single day is a constant battle—even the smallest of tasks like getting out of bed become monumental obstacles! During a flare-up, your body is literally at war with itself, and your body pays the price. Getting ready, going to school, going to work, cooking dinner, etc., — normal tasks become impossible missions for people like me living with severe invisible illnesses.

Once you are somewhere like school or work, you’re beholden to the bathroom at your body’s will—you have no choice. The flare up causes severe pain that ravage your insides which makes it hard to focus on school and at work. It’s almost impossible to focus on any task which translates into poor performances. In addition, many medications can cause mental fogginess which makes it that much tougher to focus. Unless you have experienced it, you have no idea how hard it is to concentrate when your body is at war with itself. The next time someone at school or work tells you they have an invisible illness; you better give them some major props!

Your social life becomes almost non-existent. Going out and having fun with friends seems impossible. Not only does being sick make you tired and cranky, but many medications make you even more fatigued, grouchy, and even a little crazy. It’s common for people with invisible illnesses to be anemic which literally saps the life out of you, and that makes the energy and effort required to go out seem impossible to gather. Even if you do make it out with friends, you’ll spend most of the time in the bathroom wishing you were at the comforts of home. To make things even worse, spending all that energy and effort going out with friends will exacerbate your flare up—it’s a lose-lose situation.

People can be very judgmental. Luckily, the vast majority of people are very accommodating and supportive. However, the few people that decide to make mean remarks like, “You’re faking it”, or that, “You’re being a wimp” really hurt. Just because you can’t see it, doesn’t mean it’s not there. It’s hard being a young adult and having to use a handicap pass for parking so that you can even make it inside a store without dying, but then getting heckled and yelled at by people who think you are faking and abusing the system makes it exponentially worse. To have a professor in school think you don’t really have to use the restroom and that it’s not an emergency is very hurtful and painful—maybe if they could see what was happening on the inside it’d be a different story.

Your body gets beat up on the inside and it starts to show on the outside. It’s very common with many invisible illnesses to get symptoms that appear on the outside of your body, some symptoms include: Acne, cysts, hair loss, moon face, water retention, weight gain/loss, and etc., just to name a few. These unwanted symptoms will lower anyone’s self-esteem and make life that much more difficult.

You become very thankful for all the love and support you get from your friends, family, neighbors, and even random strangers. The smallest acts of kindness like someone just asking how your day is going or even someone telling you that you are looking good can make all the difference in your day. You become thankful for everyday and for the possibility of one day getting better. You realize how lucky you are to have doctors and nurses working around the clock to help you get healthier and back to normal. As you get better, you have the desire to help others who are struggling as you once were. You realize that even though living with invisible illnesses is excruciatingly hard, it has made you a stronger and better person.

5 Tips For Traveling With Crohn’s Disease And Arthritis

5 Easy tips for traveling with Crohn’s Disease and Arthritis!

1) Check With Your Doctor

It’s always worth running your travel plans and ideas with your doctor. Your doctor should make sure you are healthy enough to travel and recommend any needed vaccines if you are going out of country. Your doctor can also make sure you have the right prescription so you don’t run of out medication during your trip! Talking to your doctor about your travel plans is a no brainer! Whenever I am planning to go anywhere I send a message to my Doctor through MyChart (Web Portals differ by provider but most have messaging capabilities). Sending a message to your doctor through a web portal is usually sufficient, but it may be a good idea to see your doctor in person if you aren’t doing well.

Remember, if your doctor says you’re not healthy enough for travel LISTEN! Trust me, it sucks being sick on vacation and it really sucks having to be airlifted off a cruise ship because you are really sick! Click the link to check out my Coast Guard Medical Evacuation from the Norwegian Pearl: https://www.facebook.com/kayden.nelson.9/videos/t.505454278/45145023042/?type=2&theater)

2) Pack Your Medications

While this may seem like a no-brainer there a lot of people who are hesitant to bring their medications on their trip due to various reasons ranging from being nervous about going through security with them to being worried about them getting damaged while traveling. While these are valid concerns there are some easy solutions!

It’s totally fine to bring a valid prescription with your name on it when you travel. Just make sure the prescription isn’t expired and your name, the pharmacy’s name, and your doctor’s information are all on the prescription bottle and you should be good to go.

If you are on a biologic like Humira, Remicade, Simponi, Entyvio, etc. make sure you don’t miss a dose while you are traveling. If you get your medication at an infusion doctor, talk to your doctor about either getting your infusion a little early or taking it late. Usually earlier is better but always talk to your doctor and listen to their recommendation (Another great reason to run your travel plans by your doctor first). If you take your medication at home reach out to the drug company about getting a travel kit. Simponi makes a great travel kit with information to help you easily get through TSA and keep your medication cold while your travel.

Simponi Travel Kit Information: http://www.simponi.com/rheumatoid-arthritis/get-support/treatment-support/travel-pack

Humira Travel Kit Information: https://www.humira.com/humira-complete/ongoing-support

3) Have a Plan

When it comes to being prepared it’s always better to be safe than sorry. Even if you are in remission, it’s always good knowing where your insurance is good at and being aware of any out-of-network costs. Always have contact information for your doctor, pharmacy, and any necessary drug information with you–you’ll never know when you’ll need it! A good trip can turn into a horrible one fast if you start having symptoms and you’re unable to get the care you need–Always error on the side of being too prepared. I always save all important contact information into my phone, and I carry a Medical ID card in my wallet that explains my conditions and necessary medications.

4) Don’t Over Do It

If you are like me, you all about having fun and doing much as possible! While this may sound good in concept, sometimes we can get too tired and stressed from traveling which could cause a relapse. It’s a good idea to set realistic expectations on what all you’ll be able to accomplish while on vacation. One of my favorite vacations is taking cruise! If you’ve been on a cruise, you know these are 24/7 non-stop vacations with something always going on. I always find the activities going on that look fun to be and do them while always mixing in a little rest and relaxation. You can still have an amazing time on vacation and do almost anything, but just be careful to listen to your body. If your body needs a break, give it one! If you overdo it you’ll probably end up regretting, so just take it easy and have a great vacation!

5) Have Fun

The most important thing to remember is to have fun! You’re on vacation, free from all the stresses and cares of life. Take it easy and enjoy yourself! You probably deserve a nice break from everything going on, and a vacation is a great way to come back relaxed and refreshed. Don’t worry about all the little details, just relax and have a care-free vacation! A break from all the stresses of life is probably just what your body needed! This is your time to kick back and relax while taking care of yourself! Enjoy!

Comment your helpful travel tips and vacation memories below! Thanks for reading 🙂

 

When Life Changed–Life With Chronic Disease

First Diagnoses–When I was first diagnosed with multiple chronic diseases.

They say the only two things for sure in life are death and taxes. While that is true, over 50% of us will be diagnosed with some sort of chronic health condition.

I was 16 years old when I was diagnosed with Inflammatory Bowel Disease (IBD). Even though I was officially diagnosed with IBD when I was 16, I had experienced minor symptoms of this horrible condition the majority of my life. It wasn’t until my symptoms became so severe that they almost killed me that I received the medical attention I needed to get a proper diagnoses and treatment plan.

I was still in the hospital recovering from my first life threatening IBD flare up when I started to feel an intense pain shooting through my ankles–a multitude of factors including high doses of prednisone and being extremely sick had caused Avascular Necrosis (AVN, dead bone) to develop throughout my ankles. To make matters worse, my ankles and other joints started to swell up so much that it looked like I was half elephant. This was due to the enteropathic arthritis (Arthritis correlated with IBD) my body decided to bless me with.

In a matter of months, a healthy, normal 16 year old had gone from poster book healthy, to chronically ill with 3 chronic health conditions. My life forever changed. I didn’t know anybody else with IBD, I didn’t know what to expect from my health in the future, and I didn’t the best way to manage my new health conditions. I feel like anybody that has a chronic condition or has gone through something similar can relate to these feelings that I felt.

While I struggled at the time to cope with the realities of having 3 chronic health conditions, I can now realize how my adversity with a lot of hard work has transformed into one of my greatest opportunities. I hope you join me in this journey as I share what it’s like to live with chronic health conditions, and share with you helpful tips I wish I knew when I was first diagnosed. Please feel free to share any questions or comments; I’ll always try to answer everything.

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