Written for Kalley South
As Spoken by her mother Amanda South
For anyone who has ever thought that living with Crohn’s Disease was just a “keep the toilet paper handy and be sure a bathroom is nearby” disease, this summary is an attempt to shine some light on the myth. Most Crohn’s patients are initially misdiagnosed and told that the disease is either directly related to the food that they are eating, or a lactose intolerance problem, or that they simply have a more severe case of irritable bowel syndrome. You would think that once discovered there would be some continuity among doctors as to what the possible solution for treating this problem would be. Once again the answers do not come easy. Food is considered to be the greatest culprit, and thus is given the weightier solution and expected to be the “one all-cure all” elucidation. Some patients are even told that the disease is all in their head or psychological and that after a series of yoga classes, the Crohn’s will dissipate.
My story begins as one of a mother, a mother who has faced the challenges of discovering that her child has Crohn’s disease in an attempt to find out what was wrong with her ailing daughter, and then finding a possible cure as numerous tests and solutions are tried.
When Kalley was born I would have never believed that her life would be one of trial and error. She was born on January 23, 2001, to two loving parents, doting grandparents, and an extended family of aunts, uncles, and cousins, all who adored her immensely. We celebrated her first birthday party just as any young family would- lots of presents, balloons, and a cake decorated for “our little princess”. Most birthdays continued along these lines, with small changes being made to the place or the theme of the next event. However, with each passing year came more unanswered questions as Kalley symptoms grew worse, and our lives became more complex.
As a baby Kalley had the standard ear infections that led to tubes being placed in her ears at a young age, the common cold, the chicken pox, and other childhood diseases as one might expect as a parent. However, when Kalley began kindergarten and she began catching literally everything that all of the children had and started missing numerous days of schools, we knew something was very uncommon about our daughter’s immune system. In January 2008 Kalley began bleeding from her bowels, which as a family brought us great concern. Kalley’s paternal grandfather had passed away with colon cancer, and our greatest fears were magnified regarding our little girl the moment we saw the blood. After numerous tests, Kalley’s pediatrician sent her to a gastroenterologist. Finally, we anticipated a solution to our problems! However, the doctors released Kalley, much to our dismay, even though her blood work was flagged and she continued to run fevers and bleed. It was so frustrating for us because we would call the local specialist and report these findings only to be told to simply “watch her” and “let us know”. That was exactly what we were doing, and we needed to be doing something more than simply watching. One thing our watching unequivocally told us was that something just wasn’t right with our little girl.
After returning to her pediatrician for a checkup, we were encouraged to seek a second opinion. We were referred to East Tennessee Children’s Hospital and was scheduled to meet with Dr. Eidelwein. We met with her, and she immediately ordered a series of tests. However, before our next scheduled visit, Kalley started bleeding profusely and her situation grew worse, so we immediately called the hospital and was told to return. Dr. Eidelwein was unavailable to see us that day so we met with Dr. Al-Tawil. After initially examining Kalley, he gave us the reassurance that we needed. His exact words to us were, “You may have to stay with us for a few days but before you leave, we are going to find out what is wrong and we are going to do something to fix it.” Dr. Al-Tawil looked like an angel in my eyes. I wanted to wrap my arms around him and give him a gigantic hug. True to his word, Dr. Al-Tawil ordered a colonoscopy and endoscopy only to discover that Kalley had Crohn’s disease. And although this was not the diagnosis that we wanted to hear, we were so relieved at finally finding an answer to Kalley’s problems. Dr. Al-Tawil immediately reassured us that everything was going to be okay, and somehow I just knew it was going to be.
Kalley celebrated her eighth birthday in January 2009. In one year, she has been to East Tennessee Children’s Hospital 18 times, three of which resulted in hospitalizations. She is on Remicade, a type of chemotherapy drug with side effects that include fatal lymphoma as one of the many possibilities. The steroid pills that she takes make it very difficult for us to buy clothes for Kalley. Although she eats very little, the bloating makes selecting outfits challenging. She may be one size in the morning and by the end of the day be forced to wear one of her dad’s old t’s. Due to her weak immune system, she doesn’t attend school but rather is home-schooled by me, her mother. Each new day brings more and more new challenges, but we celebrate each and every success of each new day in our attempt to downplay the negatives—a bowel movement with no blood, learning how to borrow in math, making a new friend, finding a bug mentioned in a newly read bug-book, finding a new medicine that works. Life is still the best with our little girl, and we have not allowed this disease neither to conquer nor define us. After all, Kalley is alive and thriving, and that’s what matters the most. We do not know what tomorrow holds, and although we never signed on to be a part of this research project, we know that each day of research means that all of us dealing with Crohn’s is another day closer to finding a permanent cure—a day where little girls with Crohn’s can go to school and play with their friends; wear normal clothes; not have to worry about the color of her stool or an unexpected bowl movement; a day when we can eat regular birthday cake like all the other children when she turns 10…and…11…and……13…and……16………and 18…………………and 25………………and……… 50……………………and……………………………………………………*
*The risk of dying for patients with Crohn’s disease is over 50% higher than would be expected for someone in the general population of the same age and sex. Based on the information found on the website http://www.medscape.com/viewarticle/555637_4.