My Experience with Crohn’s Disease as a RD
*Important: “My Experience with Crohn’s Disease as an RD” is a personal story. This information should not be used as a substitute for the medical care and advice of your physician.
“I was just diagnosed with Crohn’s disease 4 weeks ago. I am really struggling mentally, physically, and emotionally. Especially because I work in healthcare as a Dietitian for patients living with chronic disease. I feel I have failed myself, and everything I knew and encouraged others about nutrition is no longer true for me (i.e., whole grains, fresh fruit and veggies, fibre in general). I cannot eat anything without getting horribly sick. Going to someone else’s house for a meal gives me crippling anxiety. No one truly understands.”
I pulled this quote directly from the “notes” app on my phone from June 2nd, 2021. It has been 6 months since I was diagnosed with Crohn’s disease. I did not see it coming. I was blindsided and unprepared for the challenges I was about to face. After spending many years in school learning about chronic diseases, including Inflammatory Bowel Disease (IBD), and working with patients with IBD for the last few years, I understood the severity of it. I was aware of the short and long-term complications, the sacrifices and suffering it could cause, but never in a million years did I think I would become the patient. It has been a hard pill to swallow.
I thought being a dietitian would help me grasp this diagnosis much easier – that I could imagine being my own dietitian and simply treat myself. Yes, my clinical experience has given me an advantage others may not have. But it has also made it very difficult to remain level-headed, objective and to treat myself like I would my patients. To make it more challenging, every case of IBD is different, including my own. Unfortunately, there is no one-size-fits-all miracle treatment or diet that works for everyone living with IBD.
The month following my diagnosis, my condition deteriorated quickly. I had no appetite, was chronically fatigued, experienced significant weight and muscle loss, abdominal pain, bloating, cramping, fever, diarrhea, vomiting, joint pain, and hair loss.
I felt lonely, vulnerable, embarrassed, and confused. How on earth was I supposed to continue the job I loved – providing support and nutrition advice – when I wasn’t even healthy myself? In addition to this guilt and confusion, I experienced strong feelings of anger.
I was jealous of others who had the energy to exercise; who could leave their house confidently for a walk; who could eat whatever they wanted without getting severely ill; who could run into others without fear of catching a cold that could land them in the hospital. I used to be able to do those things. I was grieving my old self and missing greatly the life I had before my diagnosis. I often wondered – “Did I do this to myself? Is this my fault?” What made it worse were comments from others like, “You look great today.”; “Looks like you’re feeling so much better!”; or “You don’t look like you have a chronic disease.” While I was dealing with some of the side effects of a horrible flare up like losing my muscle, becoming extremely fatigued and weak, others praised the weight loss that I experienced, which made me even more angry and emotional for so many reasons I can’t even begin to express.
I understand it can be difficult to know what to say, and can be incredibly awkward, but I wish people would understand that saying nothing, or saying that they don’t know what to say, is okay. Many people have heard of Crohn’s disease, but they don’t truly understand what it entails.
Living with a chronic illness that is invisible makes it that much easier to hide, and more challenging to talk about. This is something I am hoping to change.
After complications, hospital visits, and many failed treatments, my gastrointestinal specialist finally started me on a medication called Remicade and my first treatment was in August. Remicade is given intravenously every 6 to 8 weeks and works by blocking a protein in your immune system called TNF-alpha. When you have Crohn’s disease, an overproduction of TNF-alpha causes your immune system to mistakenly attack cells in the digestive tract, leading to inflammation – the fundamental cause of the symptoms people suffering from Crohn’s disease experience. However, by blocking TNF-alpha, Remicade lowers your ability to fight infection and can lead to serious illness, which is something that still terrifies me.
Despite the many side effects and dangers of being on this type of treatment, I am beyond grateful for it. It has changed my life and brought back a sense of normalcy I hadn’t felt in a long time. It has allowed me to take the time to digest (pun intended) my experiences these past 6 months. It has given me a whole new appreciation for my health which I will never take for granted. I can empathize with others, including my patients who live with chronic illnesses, in a deeper and more meaningful way than before. I have joined support groups, talked to my psychologist, and leaned on close friends and family. But the truth is, I am still learning to navigate this new life. I feel like I am still coming to terms with having an incurable disease.
Many people ask me, “How long will you be getting these Remicade infusions for?” My answer is always, “Forever. Or until it stops working for me and then we have to find another treatment.” People find that response very shocking. I think it’s important for others to understand that this is not an acute or temporary illness, no matter how badly people living with it wish it was. It is something that we will live with for the rest of our lives, alternating between periods of remission where we often forget we have this disease, and flare ups where we become extremely ill all over again. Every day is different, and every day brings new challenges that we must overcome.
My experience with Crohn’s thus far, no matter how brief, is that those that suffer from this disease do so in silence. They are worried not only about what others will think, but of being misunderstood. This is because we often aremisunderstood. I used to dread the feeling of telling others about my disease. I feared being judged and no longer being known as Deanna – a passionate, kind, resilient person who loves their job, but rather, “that dietitian with Crohn’s disease.” Even when asked to write this post, I wasn’t sure I was ready, and those insecurities and fears resurfaced.
However, I am now at a place where I feel not only ready, but empowered, to talk about my disease, and I hope by doing so, it will encourage others to feel the same way. I discuss and study medical conditions like IBD daily in my profession and I have recognized that it’s about time I start bringing awareness to them outside of it as well.