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!

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

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!

Author: Dylan B Nelson

After being diagnosed with Crohn's Disease, Avascular Necrosis, Enteropathic Arthritis, and an Atrial Septal Defect, Dylan like so many other people with chronic conditions struggled to manage his health. Being frustrated with the current solutions, Dylan helped create mediswarm.com, a social health network where it's easy to meet other people with the same conditions. Users can ask questions and get real answers, see top solutions for their conditions, and get support from a community of people just like them. Dylan's ultimate goal for MEDI+SWARM is that it can become a resource for individuals who have chronic health conditions to get the help they need and to help improve their overall health outcomes.

15 thoughts on “Moving Forward—Life with Chronic Disease”

  1. I’m so glad you read one of my blog posts and I could find you here. Keep it coming – great words of inspiration and positivity, yet not being sentimental or untruthful in any way. I look forward to seeing more posts.

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  4. I’m sorry for all you have already had to experience but you are right. Trying to stay positive makes a big difference and I know from my rheumatoid arthritis and other chronic illnesses not even fully diagnosed yet. Best wishes to you and much strength. Keep fighting. Xoxoxo

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    1. Thank you for uplifting feedback. Staying positive and having a happy attitude has made all the difference for me. I am sorry to hear about your struggles and wish you nothing but the best. Hopefully you can get to a point of remission soon! All the best! 🙂

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  5. Positivity really goes a long way!!! Some people might think it’s artificial and that nothing is really resolved by being positive but you have just prove them wrong. I’m a firm believer that positive-thinking greatly impacts the way we live our lives because it affects our cognitive process. I’m glad you liked one of my posts and I found your blog. Keep spreading the positive vibe! 😊

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    1. Thank you Nina 🙂 You’re spot on! Being positive has an impact on every aspect of our lives and can make all the difference between a good day and a bad day. I can’t wait to read more of your posts 🙂 Thank you again for your kind feedback!

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  6. I can totally relate to your post! I always appreciate reading what other chronically ill patients have to say – especially when I can resonate so well with it! I’m coming up on my 8-year anniversary with Crohn’s. I gotta tell ya, I was hoping we would’ve broken up by now!

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    1. Haha, thank you for your comment! It’s nice being able to relate to someone that has walked in your shoes and knows some of the challenges you’ve faced. You’re telling me! I’m going on 8 years too! This is definitely the longest relationship I’ve had! Haha hope you are doing well 🙂

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