Category: My Story Posts

Redefining The Future of Healthcare

Using MEDI+SWARM’s machine learning to better healthcare outcomes.

One of my passions in life is helping to create MEDI+SWARM. MEDI+SWARM is a social health network that connects people with similar health conditions into communities to easily allow them to see top-rated solutions for their condition, ask questions and get real answers, and to post helpful ideas. While there are quite a few “social health networks” MEDI+SWARM is unique in that it leverages modern technology like machine learning to actually learn from users and improve their health. For example, if in a community of Crohn’s Disease and Arthritis, a user says that by eating salmon it reduces their joint pain and Crohn’s Disease symptoms, and other users agree with this, then the suggestion of eating salmon to reduce joint pain and Crohn’s Disease symptoms is analyzed by our learning machine. Our learning machine will then analyze that statement to realize and identify the components in salmon to see if there’s something known to reduce these symptoms. Bingo! The system will realize Omega 3’s and the fatty acids in salmon are known to reduce these symptoms. This information is realized back to the user and to researchers. This is just a simple example of what the learning machine can do! Just imagine the information it can learn from people who actually live with chronic disease on a day-to-day basis.

Another incredible feature we are working on is the capability of using IBM Watson Health to help answer questions asked by users. Imagine the ability to ask any and all of your health questions to IBM Watson Health, who will then reference medical journals and other information to bring you a real answer. It’s like having the power of a physician at your fingertips!

While MEDI+SWARM is still in development we hope to launch into our Beta soon. If you visit the site today you’ll notice the site isn’t quite ready yet. We are working diligently to bring MEDI+SWARM’s Beta MVP to production soon. If you have any feedback on our planned features, or something you would like to see happen, please feel free to share your feedback as it’s much appreciated.

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.

What the growth looked like after oozing
Bone fragment and growth as it begun to ooze.
First stage of growth with a lot of swelling.
Bone fragment and growth

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 🙂

You can see the metatarsal on my left foot is significantly thicker than that of my right foot.

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!

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.

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.

%d bloggers like this: