Our Stories

Diane K., a Clinical Trials Ambassador shares her daughter, Alysa’s story.

It all started about 22 years ago— my life changed dramatically halfway through my freshman year of high school. I became very sick. Finding out I had Crohn’s disease threw me into a state of confusion asking, "Why Crohn’s? How could this happen?"

I was diagnosed with moderate-to-severe Crohn’s disease when I was 12. Unfortunately, nearly all FDA approved medications have proved unsuccessful for me over the last 20 years, and I’ve required four surgeries involving resections of my colon and small bowel due to the aggressive nature of my case. I’ve experienced symptoms all over my digestive tract, from mouth to anus, and have suffered complications involving skin issues, anemia, weight loss and weight gain, as well as others that many Crohn’s suffers are all too familiar with.

Beginning in my college years, I struggled with occasional GI symptoms. I always brushed it off as stress or something I ate. It wasn’t until several years after I graduated and was in my professional career that my symptoms worsened so much that I could no longer ignore it or brush it off. My husband encouraged me to finally see a doctor so we both could see that this was not normal. But, the first GI I went to only saw a healthy looking, young woman, smiling and happy – how could she possibly be sick? He put it off to stress and heartburn, gave me medication for it, and sent me on my way.

I was diagnosed with Crohn’s disease when I was 17 years old. I began experiencing symptoms during my junior year of high school. Three months later, two-and-a-half weeks of school missed, and two surgeries to resolve fistulas, I was diagnosed. My care team and I began two years of exploring and tweaking my medication regimen until we finally found a treatment that worked. Fast forward seven years, I began developing antibodies against this medication and was placed on a different biologic which I have been on ever since.

In 2014, I was on NBC’s The Biggest Loser. I was completely healthy before going to the show, but I was extremely obese. I was unhappy and had zero self-worth, but by the time our season finale aired in January 2015, I shed almost 100 pounds and felt amazing! My self-confidence was through the roof and for the first time in over 20 years, I was completely happy and healthy. I couldn’t ask for a more supportive husband, son, and family. After the show, I continued to work out six days a week and ate extremely healthy food. In June 2015, I completed my first triathlon and felt on top of the world. I kept my weight off for over a year—not an easy task! But life came crashing down in May of 2016.

Little did I know that it wouldn’t impact my romantic life much at all. So much so, that I started a relationship with a girl two days before my ostomy surgery. I told her what was ahead, and she was just happy I would be healthy enough for us to spend time together. 

IBD does not define who you are, it does not dictate who or what you will become. And one day, it won’t exist. Until then, we fight relentlessly without reservation. 

It’s difficult to see a loved one in pain and distress and not be able to do anything about it.

A mother shares how Camp Oasis helped her daughter cope with Crohn's disease and find a place of belonging.