“Growing up with Crohn’s disease – A patient’s perspective”

I will never forget Halloween the year I was in the sixth grade. Not for the candy, not for winning best costume as a Panda Bear and not even for all the parties that filled the day of school. I will never forget Halloween in the sixth grade because I spent most of it in the bathroom. As kids dressed as witches, princesses, pumpkins and cats walked in and out with a giant, sugar-high grin, I stood near the doorway doubled over in pain, nauseous and exhausted. Despite being the stubborn little girl that I was, I could not bear to go back to computer class. Rather I submitted again to my newly established routine over the past few weeks and walked to the principal’s office. It is here where I would call my mom once again to pick me up from school early because of a “bad stomach ache.”

This is just one of the many snapshots I have of my battle with Crohn’s Disease over the years. Now a twenty-one year old senior at Boston College, I find myself piecing together these chaotic, uncertain and fearful moments from my adolescence. The ability to play field hockey, travel the world, go out to dinner with my friends, live in a college dormitory may all seem like minor accomplishments but in the worse stages of my Crohn’s disease seemed like unattainable dreams. One might wonder how I managed to get myself from the hospital beds, the examination tables, heavy doses of steroids and feeding tubes to my relatively stable, healthy lifestyle as a Boston College senior about to become a young professional in New York City. It is easy for me to speak so confidently of my successes now, but when one is battling the worst stages of the illness, all energies are drained as stability and health are so are in the distance. However, it is in the process of reflecting and sharing experiences that one person with Crohn’s disease can ease the path to recovery for another.

My journey was by no means smooth, but it is important for fellow Crohn’s patients to know that with the right knowledge, doctors, and support systems that a normal and healthy lifestyle is certainly a concrete reality. Although I face new challenges everyday as a person living with Crohn’s disease, I would like to share with you a few bits and pieces of information that I think would have soothed the overwhelming confusion and anxiety that filled my world as a kid with Crohn’s.

1.) Crohn’s what? Crohn’s Disease?

First and foremost, it is essential that parents and doctors explain what exactly Crohn’s Disease is. I would say for the first couple of months of being diagnosed, I could barely explain myself what the illness entailed. For all I knew, I had a really bad stomach ache. Overwhelmed by the situation themselves, parents and doctors often lose sight of the child as a person in this emotional situation. The child becomes a “patient” and the parents become consumed by doctors appointments and administering medications before they remember to ask how their son or daughter feels about the situation. For example, I know the first question that jumped inside my head upon being diagnosed was, “Am I going to die?” Nevertheless, as ridiculous as it sounds these are the kinds of questions that go through an adolescent mind and must be addressed.
In addition, young patients should not be afraid to inquire and demand information themselves. Forced to mature rather quickly, young Crohn’s patients cannot allow their age to scare them away from confronting doctors and parents about their condition. My parents could not be with me for every minute of every day I was in the hospital, but I quickly learned to ask questions, inquire about procedures and medications. Your doctors might be surprised, but a majority of the time, the confusion and anxiety of being diagnosed with Crohn’s disease is rooted in the fact that one is simply misinformed or uninformed about their condition and treatment.

2.) What do you mean I can’t eat popcorn, chocolate and French fries? – Separating fact from fiction

A second bit of information I wish I had been made aware of is to challenge and investigate all information available about Crohn’s disease. Just because the information is in a book does not mean that it is applicable to your situation or is even factual. So much of the information provided in books about Crohn’s when I was ill about ten years ago dealt a great deal with the nutrition of a Crohn’s patient. About every other week I was trying a different diet from low fat to no caffeine to no dairy, with a whole lot of stress caused and little progress. However, once I began to see Dr. Benkov at Mount Sinai he told me that there really was no need for me to avoid any kind of food – not all Crohn’s symptoms can be controlled by your choices in food. Meanwhile, for a whole year I had been avoiding birthday parties and sleepovers because I thought I would not be able to drink the caffeinated soda or eat the chocolate and pizza like the rest of the kids. So remember to challenge the facts and consult your doctors. Where one might blindly accept advice is where a great deal of unnecessary anxiety and confusion may arise.

3.) Removing the Label and Reclaiming Normalcy

This is perhaps the most valuable bit of information that I was unfortunately lacking when diagnosed with Crohn’s Disease at such a young age. Having always been a child who excelled in all activities I was engaged in from academics to athletics, to be negatively labeled as “ill” or “sick” was devastating. Once one is labeled by friends, family and even simple acquaintances we are all faced with the seemingly impossible question of how does one reclaim normalcy. Although a Crohn’s patient can choose not to talk about their illness, it becomes very difficult to find excuses for the changes in physical appearance, the constant trips to the bathroom, and the absences from school. Soon enough it is public knowledge that you are “sick” and in effect abnormal.

It is in these moments when a kid with Crohn’s disease feels absolutely powerless that he or she must fearlessly take a risk. One must accept the new challenges of the Crohn’s disease but never cease to strive for a normal routine. As a competitive athlete, Crohn’s proved to be a major obstacle. However, I learned that I might not be able to perform as well as I did before my Crohn’s but with a little risk-taking, support from family and friends, and some extra self-motivation I found myself excelling once again on the softball diamond and field hockey field. As much as we struggle between denying our illness and letting it take over the course of our daily lives, we must learn how to manage the life obstacle that the Crohn’s disease presents before us. Crohn’s is a chronic illness, it is something one will have for life, but by no means does it have to become our lives. As young adults with so much more to experience waiting before us, we must accept the Crohn’s disease as a part of us but not all that we are and can be. Surround yourself with knowledgeable, supportive people and the risks along with a life with Crohn’s will become easier and easier.

“Staying Positive With UC”

By Erik

I never let UC ever control my life or slow me down. I was a very active person playing a lot of ice hockey and always outside mountain biking or having paintball matches with my friends. I was always doing something physical. My parents knew there was something wrong with me just by watching me during my sophomore season of varsity high school hockey as they noticed my game was off and I was slower and looked as if I was out of shape. I had a colonoscopy and was diagnosed with UC in February of 2006, a month before my 16th birthday, right after finding blood in my stool a few days prior.

Soon after being diagnosed with UC I was hospitalized for over a week. While I was in the hospital I met a lot of wonderful and very helpful staff while at Mount Sinai, including Dr Benkov and his office staff. Months went by and I was treated with medications that most people with UC were given but they did not help control my symptoms. The only medication that was helping me was a steroid called prednisone. As months went on I gained about 50 to 60 pounds due to the prednisone. Even though the steroids changed the way I looked, I never let it slow me down. I had to stop playing hockey. This affected me a lot, hockey was my life! I had been playing since I was 8. I continued to be active and still went mountain biking as much as I could.

Eleven months went by and no medications were helping to put me in remission. I continued to be steroid dependent and it was recommend by Dr Benkov to have my colon removed and to go through with this surgery as soon as possible because I needed to be taken off the steroids. Two weeks later I met my wonderful surgeon, Dr Harris. His plans were that I would have to go through two surgeries three months apart from each other to remove my colon. The first surgery was February of 2007. Dr Harris removed my whole large intestine with the exception of my rectum and I was given an ileostomy. The first week or so after that surgery was tough but I got used to having an ileostomy and just thought positive because I knew that the worst was behind me. I wasn’t sick anymore and I was no longer suffering from the cramps and pains of UC. I returned back to school after my 6 weeks of recovery and I planned on passing my junior year of high school! Three months came and went quickly; it was time for my second surgery. During this surgery Dr Harris would remove the remainder of my rectum and I would no longer have an ileostomy. He made a J – Pouch out of my small intestine which would be my new rectum.

I have come a long way since 2006 when I was first diagnosed with UC. I missed over 21 weeks of my Junior year of high school but with home tutoring I passed the school year. I returned to playing hockey my senior year and it was such a wonderful feeling to be playing again. I am 21 now and have taken up photography and just started up with my own business. I am also working for a European car website. I attend multiple car shows and events all over the east coast to cover the event and promote the website. I have met so many wonderful people and have made many friends. I never allowed UC to run and control my life. All I can say is continue to do your best and never give up!