Moving Forward—Life with Chronic Disease

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

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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!

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.