Ulcerative Colitis: Living with and Learning from Chronic Disease
What do you want to be when you grow up? This is a question we are asked countless times, starting when we are so young that anything seems possible. Many people struggle with finding the right path, but for me, studying nutrition fell into place naturally as a result of my complicated medical history and my interest in how I could help myself feel better through diet.
Let’s start at the beginning.
When I was four years old, I started to experience gastrointestinal symptoms. Within a few months, I was diagnosed with Ulcerative Colitis. UC is a chronic inflammatory bowel disease that causes inflammation and ulcers in the inner lining of the large intestine. My doctors started me on daily medication that helped me to feel better and kept me free of symptoms for the next 4 years.
At age eight, while still on daily oral steroids, I started having 8-10 bloody stools per day. That’s not something an 8-year old girl, or anyone else for that matter, really wants to talk about! I was admitted to the hospital for more tests and observation. It struck our family funny that, while in the hospital, I was told that I could eat anything on the menu. French fries, ice cream, and macaroni & cheese were all given the green light by doctors, but we knew from keeping a food diary that eating such things would make my symptoms worse. At that time, no one was talking about what I was eating. The focus only on what happened after I ate.
After that stay, trips to the hospital became routine for us. Every three months I had doctor’s appointments and blood work. My team of experts came to feel like a family! My parents saw my daily struggle to live comfortably in spite of my UC, and they wanted to be sure we were exploring all of our options and learning all we possibly could about how to manage a chronic, lifelong disease
In addition to my doctors, I was fortunate to meet with a nutritionist who introduced me to the gluten-free diet. Back in 2003, gluten-free products were few and far between. Grocery stores didn’t have whole aisles dedicated to gluten-free foods like they do today. We had to go to small specialty stores to find even just a few gluten-free items. As you can imagine, it was extremely difficult for a 9-year old kid to be on a special diet. Eating lunch at school was the hardest part. I got some funny looks, and not being able to share snacks or trade with my friends was isolating at times. Most of all, I never wanted anyone to ask why I was eating different foods because then I would have to try to explain my condition.
My parents noticed that this kind of thing was a struggle for me, so we joined an IBD Nutrition/Support Group (IBD stands for inflammatory bowel disease). The support group helped with the emotionally difficult aspect of my illness, but also proved to be medically beneficial because it exposed us to a different approach to managing my condition. Conversations about diet changes opened my eyes to supplemental treatment of Ulcerative Colitis. My mom was an integral part of my disease management as well. She never gave up, but instead was always searching for new treatment options and helping me to feel better by learning as much as I could about UC.
We were making progress. My disease was under control for many years, despite small flare-ups here and there. I never quite reached remission (a period where symptoms disappear and disease is not active), but for the most part I felt like I was a normal kid. I was dancing 5 hours per week, playing the flute and spending time with my friends. I was in good shape… except that I was always very tired.
My journey with UC guided me into the field of Nutrition
Fast-forward 7 years to August of 2015, I was about to begin my third year of college as a Nutrition/ Dietetics student. At the end of the summer, I began to experience UC symptoms again. With my studies and my life-long food-condition-knowledge under my belt, I decided to eliminate additional trigger foods (foods that cause UC symptoms) from my diet. After all, this was something I could do to help myself, and it had worked in the past with the elimination of gluten and dairy, as well as the avoidance of fruit skins, raw vegetables, and nuts during acute flare-ups. Unfortunately, this time was different. Those diet changes weren’t effective, which left me feeling frustrated and discouraged. I wanted to have my disease under control before returning to school! Having a rigorous course-load and not feeling well would be a really stressful combination, and I wanted to be able to enjoy this time in my life, right along with my peers.
I knew the drill: back to the drawing board for more tests and a colonoscopy. Results showed my disease was not under control. Not only did I need a new treatment path, but it also became clear that it was also time to switch to adult- care doctors. I had been with the same doctor, Doctor Laurie Fishman at Boston Children’s Hospital, for 17 years. Moving on was very emotional for both of us,. She watched me grow up and had been there for me for so many years. She was not only my doctor… but she had become my friend. When switching GI doctors it was important that I had someone that I could build a relationship with. For every person who struggles with a chronic disease, your team of support is invaluable.
My new GI physician recommended a different course of treatment. Two new medications were added to the list, but nothing was helping with my symptoms. I found myself overwhelmed with a heavy course-load, the challenges of living on my own, more medications, with no relief from my symptoms. Meanwhile, as anyone who knows about UC knows, stress tends to make symptoms even worse, and the whole thing becomes cyclical. I was stressed about my symptoms and that stress was contributing to my symptoms getting worse. I knew I needed to find a better way to take care of myself.
Upon returning home for summer, my doctor put me on a course of steroids and as I started to feel better, I felt more determined than ever to discover new ways to improve my condition!
Fortunately, my dietetics program led me to an internship with Kindrdfood. While learning about how the company is helping patients, I made my own appointment with one of the dietitians who specializes in IBD. During my consultation, she recommended that I try a new probiotic and encouraged me to try the IBD Anti-Inflammatory Diet because studies have shown that it helps alleviate IBD symptoms. The probiotic she suggested is specifically for patients with IBD and IBS, and the diet is gluten, dairy, and sugar-free and also eliminates foods with certain additives. I was relieved to have some fresh advice and anxious to try a new approach to improving my own health.
My first couple of months on the new diet haven’t been easy, but I already feel like I have more energy and I know I am doing the best I can for myself. I have always eaten “healthy,” but this diet requires me to follow what my body, specifically, can handle. This means smarter shopping and even more label reading, but any time invested in better health is worth the payoff of feeling better! It takes a lot of patience to carry it out, and it may take a full 6-9 months to make a significant impact, but the road looks a lot more attractive when you know you’re heading in the right direction.
Although this disease began for me in childhood and has thrown me more than a few curveballs along the way, I will tell you that having UC has not defined who I am. I am a 22-year old woman who enjoys exercise, yoga, spending time with family and friends, and who happens to have a chronic disease. UC has helped me learn how to listen to my body and also guided me toward a career in nutrition where I hope to help people like myself find their own path to a symptom-free life. Struggling to be pain-free over the years has made me a more compassionate person, and has made me aware that not every illness can be deduced from appearance. I’ve also become more aware that many people are battling silent conditions and are inhibited when it comes to discussing their plight. I hope that by sharing my story I can encourage others to be their own biggest advocates and search for the right support team of doctors and dietitians.
Chronic illness is a journey that rarely ends in a one-time cure. Instead, these kinds of illnesses change over time and require us to continually work t
o improve our quality of life and adapt to our bodies’ ups and downs while armed with new information. I dream that one day there will be a cure for Ulcerative Colitis, but, in the meantime, I am comforted by the knowledge that people like my new dietitian and companies like Kindrdfood are here to help.