Making A Choice To Heal:
Recovering from Ulcerative Colitis
Recovering from Ulcerative Colitis
By: Marisa Marinelli
Special Feature Article on the Macrobiotic Guide based out of the United Kingdom.
Halfway through class I begin to struggle. I walk away from the ballet barre and sit down in the corner, no longer able to ignore the unease and discomfort in my stomach. My Advanced Ballet III professor approaches me after class, concerned about my behavior. "This might sound weird," I say to him, "but I feel like I can't feel my stomach, like it's numb." With a look of skepticism and obvious condescendence he replies with minimal sensitivity. "Well, I just think you have a weak center."
That memory has always stuck with me; my professor, even with his hint of arrogance, was correct about my weak center. I was a 19-year-old college student, training to become a professional dancer, when I was diagnosed with an Inflammatory Bowel Disease. I wasn't aware of it at the time, but the numbness I had been feeling was the beginnings of severe inflammation of the colon.
I have actually been told I'm lucky. It only took two colonoscopies for my doctor to say, "Good news! You don't have Crohn's Disease, it's only Ulcerative Colitis." If that's "luck," I wonder what winning the lottery is like. Having never heard of either disease, at that time I couldn't understand how my life would never be the same.
It's been a seven year journey of struggles and success, but today I finally understand that my health was not a matter of "luck"- it was a matter of choice. I was fortunate enough to have learned about macrobiotics; to have the option to choose an alternative healing path, I chose to heal.
After my diagnosis I suffered immensely for several years. Flare-ups would come and go monthly and I'd find myself in the hospital for weeks at a time. Severe diarrhea and vomiting caused me to loose so much weight and muscle mass. I had difficulty walking, let alone dancing. I never knew what to eat and I was always in pain. My doctors would treat me with powerful, harsh anti-inflammatory drugs to ease my bouts of illness.
I wouldn't offer a dose of prednisone to even my worst enemy. The side effects are torturous. I sacrificed whatever healthy organs I had left to prednisone. One year after my diagnosis I learned, in addition to the ulcerative colitis, I was one the 5% of all IBD patients in the world to develop a secondary reaction to the disease called Pyoderma Gangrenosum. In this rare instance, inflammation is no longer contained in the colon; it is systemic.
Ulcers can begin to develop on my limbs. If ulceration grows into the bones, the doctors would have no choice but to amputate that limb. Being that my case was so rare, my doctor had never treated or met a patient with these conditions. Confused, he believed that I was the worst case of ulcerative colitis he had ever seen.
Extreme high dosages of prednisone seemed to be necessary to put me into a temporary remission. Because I had a strong, dancer's body, I survived the first huge flare with all my limbs and no surgery. However, a few months after I was off the drug, I would relapse into the same cycle and find myself back in the hospital.
I feared that this drug-dependent life was the only choice I had.
Surgery was never an option for me. Call me superficial, but I wasn't willing to part with any of my body parts. Drugs were not the answer; they would only weaken my immune system and that's not something I'm willing to sacrifice. And, who wants to take 20 pills a day for the rest of their life? Doctors could not offer me any other hope, so I began to look for alternative options. Macrobiotics was my answer.
I became friends with a young girl, who also suffered with ulcerative colitis. She gave me a book to read called "Controlling Crohn's Disease The Natural Way." The book is written by Virginia Harper, a woman who healed her Crohn's disease through a macrobiotic-based diet and lifestyle. I read the book, cover to cover, in 2 days. "This makes sense," I thought. "I have nothing left to loose, so I might as well give it a try." I never imagined my body being "off balance." Can sea vegetables and brown rice really make a difference to my body? I found Virginia's Web site and contacted her for a consultation as soon as possible. Macrobiotics provided a new hope for me, and a new life.
Hope is great, but I needed more hands-on guidance.
Although Virginia Harper became my “guru” of digestive diseases, she was located geographically too far for me to travel at that time. I decided to go to the source of macrobiotics, the Kushi Institute in Becket, MA. You’re talking to a girl who didn’t even know how to boil rice, let along know what the word “blanching” meant. I needed some drastic help on my understanding of cooking and philosophy. I signed up for the Way To Health Program in February 2006. There’s no understatement here, this program completely changed my life. After 10 days of living in the Berkshires, I returned to NYC a different person, AND my symptoms were going away! I learned about a plant-based diet, yin and yang theory, how to cut vegetables, and most important, WHY any of this information is important to our health and well-being. With the information I was given from Kushi Institute’s program, I had the motivation to set myself on a strict “healing program” for myself. It’s more than just dietary changes that need to take place. I needed to learn that if I was patient with myself, every day, in every way, I will get better and better.
Nobody says change is easy.
Being from a first-generation Italian family, food is a huge part of our culture. We love it and can't get enough of it. Pasta, cheese, and tomato sauce were my main food groups. If you didn't lick your plate clean, Nonna (or "grandmother," in Italian) would chase you around the kitchen with that last bite on her spoon. I never thought about how food affected my body because I was always very thin and fit. When I told my family I was changing my diet drastically, they had no idea how big of change I intended.
With family and friends, I suddenly became the "weird girl" who didn't eat meat or dairy. I'll never forget the time I went to the beach and a friend jokingly asked if " I was going to eat the seaweed for lunch?" For someone who didn't want to change her diet in the first place, it was very difficult to find motivation to keep on this path. Not only were the comments, and sometimes jokes, hurtful; I didn't know how to cook! The first time I had to make brown rice I asked my mom, "How does it cook?" I couldn't pronounce any of the foreign foods, or find them at my local supermarket. An ume-what plum? But the biggest boost of confidence and motivation was that IT WORKED!
Within the first month of committing to whole grain, beans and vegetables, my symptoms were gone and I was jumping out of bed in the morning. After a few more months on a macrobiotic approach, I saw a huge difference in myself; more energy, calmer moods, better sleep and I was happy! I was able to return to dance and enjoy it more than ever.
My story doesn't end there.
Making the change to a macrobiotic diet and lifestyle was, and still is, one of the hardest things I've done in my life. Even after seven years there are continuous ups and downs. Thankfully, however, it gets easier. The great new is, I have the rest of my life ahead of me to live fully. There was a time of my life where I thought life wasn't worth living if you couldn't enjoy some macaroni and cheese; I was wrong. Honestly, today, I can say I don't miss it.
The rewards of eating good food push me through the hardest of times. Don't forget your support group. People come into (and leave) your life for a reason. I have learned to take every experience for what it is, and then let go. Stay close to those that are truly supportive. Family is forever, but it's okay to disagree when it comes to what's best for you.
It's during the most challenging parts of life that a person needs to be the strongest and make the wisest, and often most difficult, of choices. I chose to be thankful for my disease. I wanted to heal myself: mind, body and soul. I made the decision to do whatever it took to find a way to heal myself because I was NOT going to spend any more of my life being ill. I was, and still am, a young adult with lots of ambition and dreams. My body was weak; my will power was not.
I've witness many people, faced with a serious health issue, turn away from hope. "This isn't an option for me" or "It's too hard." We all have a choice in our life to create our own destiny and it's up to us to decide what we want that to be.
I've made the choice to heal and hope to inspire others to do the same. I've chosen food and life over doctors, drugs and surgeries. I've learned at a young age that if you don't have your health, you really don't have anything at all.
To those who are lucky enough to come across my story, please know for life and health, you always have a choice.
Marisa now counsel, coaches, teaches cooking, and inspires others as they transition their lives and regain their health. She is currently the head of Marketing, Promotions, and Summer Conference living in the Berkshires. She's a Kushi Institute Level’s graduated, and a junior counselor. In 2008 she spent three months interning with Virginia Harper in Franklin, TN. In 2010 she completely Christina Pirello's 6-month whole foods cooking program. Currently she is enrolled in David Briscoe's Macrobiotic Counselor Course with Macrobiotics America. In Fall 2015 she has plans to enter a graduate program for her Master's in Nutrition. It's only the beginning for her as she continues her path to becoming a macrobiotic counselor and an alternative health nutritionist.
Through her own experiences with healing, she has been inspired to help others embrace their health and abilities to heal. Marisa has held two local titles in the Miss America Organization (Miss Spirit of New York 2006 and Miss Jubilee 2007) and has placed Top Ten in the Miss New York State Pageant for two consecutive years. Through her involvement with this organization, she was able to continue to advocate her platform, Understanding Crohn's Disease Through Lifestyle and Diet.
Be sure to follow her blog Cooking Macro The Italiano Way, as she cooks her way through Christina Pirello's cookbooks, an Italian/macro chef and inspiration to Marisa. She has learned a great deal about food preparation and menu planning, which she shares through private chefing and cooking classes. She's created the NYC Macrobiotics community on Facebook where she hosts and organizes local pot-luck dinners and introductory lectures on macrobiotics and living a great life.