Living With Arthritis and Necrosis

I have had a lot of people reach out and ask me about what it’s like having arthritis and necrosis in my ankles, and how I manage it on a day-to-day basis. I’ve decided to share a couple “highlights” about living with arthritis and necrosis damaged ankles. (You can see some the current status of my feet and the noise the damage makes here: Damaged Ankles)

In 2009, I was diagnosed with arthritis and necrosis in my ankles and throughout my feet (Avascular Necrosis is also called Osteonecrosis). Specifically, the damage is pretty bad in my talus and metatarsal regions with both feet suffering from collapses which means part of the bone in those areas of literally collapsed down.

My first surgery due to arthritis and necrosis was on my right ankle. I had a bone fragment break off my ankle and a growth actually started growing on the bone fragment! I immediately went to the doctor who referred me to a specialist who then performed an in-office test, and then scheduled me for surgery the very next day. Luckily for me, the growth wasn’t cancerous and the bone fragment was successfully removed. While the Orthopedic surgeon was removing the bone fragment, he also cleaned away additional bone debris which helped alleviate a lot of pain in my joint. I’ve inserted some pictures so you can see the bone fragment and the growth that followed. The growth ultimately started oozing which is why you see some scabbing.

My next surgery involved scoping my left ankle and repairing my big toe metatarsal. I was already suffering from severe pain in my ankle joint due to floating bone debris caused by damage from necrosis and arthritis, when my big toe metatarsal joint literally blew out to the side! My big toe metatarsal was so weak from the damage that it completely fell apart! When it happened, I was walking and I could feel it “pop”, and then tremendous amounts of pain shoot through my foot. For the most, the majority of bone debris was removed.

Unfortunately, it’s only been about three years since that surgery, and I already have significant bone debris in my metatarsal region again. I also have significant bone debris again in both ankle joints. Even normal walking can cause excruciating pain when a piece of floating bone debris lands in just the right spot. If I am having a flare-up or a “bad day” I can experience significant swelling in my ankles and metatarsal region which causes a lot of pain, and severely reduces my mobility.

I consider myself pretty lucky for a couple of reasons: 1) I was diagnosed with necrosis when I was young (19) which increases the possibility of my body being able to somewhat heal itself. 2) I’ve been able to have some of the best treatment including electrical stimulation. I really hope to have stem cell treatment when hopefully it can be approved by insurance, but that seems like to might be a while. 3) I’ve sort of “adapted” to the pain. Most days I only have mild pain, but it’s definitely manageable. Here are a couple of pictures of what my feet look like today 🙂

If you’ve been diagnosed with arthritis and/or necrosis it can be a very tough thing to deal with. However, don’t lose hope! I’m still able to exercise regularly (which actually helps) and do a lot of normal activities. It will be tough for sure, but it’s definitely worth it to keep a positive attitude and keep pushing forward!

Thanks for reading, and if you have any questions feel free to ask!

-Dylan

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!

25th Birthday–New Goals

I share two important goals as I celebrate my 25th birthday!

Welp. I’m officially in my mid-twenties now. Yesterday, July 2, was my 25th birthday which is hard for me to believe—It’s crazy looking back and seeing where I’ve been, and just how much I’ve progressed. Ten years ago, I had rampant, undiagnosed Crohn’s Disease which has changed my life forever. I’m eternally grateful I’ve been able to heal and recover and get to the point of health that I have today. Looking forward to the next ten years I have multitude of goals that I want to accomplish, but specifically two really stick out to me:

  1. Maintain My Current Level of Health and Continue to Heal- Ask anyone with a chronic disease, every day is a battle to maintain your health. There are so many things that could trigger a flare up or a setback. It’s so important to take care of your body and listen to it’s needs. I also want to make significant improvement the condition of my ankles. As many of you know, I have severe avascular necrosis combined with arthritis in my ankles which prevents me from running, jumping, and lifting heavy weights. I’d love to prove the doctors and everyone else wrong and make progress in my fight against avascular necrosis. One day I’d love to be able to run!

 

  1. Help Others With Their Chronic Disease Battles- I feel extraordinarily blessed in my fight against chronic disease that I’ve had the best of the best doctors and resources to help me get better. I’m aware that not everyone has had the same resources and opportunity to get better like I have. I’m working on mediswarm.com to help others dealing with chronic disease to find a support group that can actually help them get better along with finding answers to their questions, sharing ideas, and being able to see top-rated solutions. I’m always available to talk about ways of living with chronic disease and serious life hacks to make things better. If you ever want to talk, chat, IM, whatever, just let me know 😊

 

I know I only shared two goals, but I feel like they are so very important. If I can continue to take care of myself, then I will be able to help others in their journey even more. Here’s to the best yet to come!

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!

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

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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.

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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!

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!