Our Stories

Kagan first started experiencing symptoms when she was beginning her senior year of high school. It took three months for doctors to ultimately diagnose her with ulcerative colitis. Kagan credits the Foundation with being a crucial piece of her journey. “Just knowing I could log onto the Foundation website and get trustworthy facts and connect with people who have gone through exactly my situation has been so comforting,” Kagan says. “There’s nowhere else to go for this kind of information!” Your generosity will help ensure young people like Kagan get the information and support they need.

Jackson’s symptoms began on Halloween night when he was 10 years old. A few days later, he ended up in the emergency room, and by Thanksgiving, he was diagnosed with ulcerative colitis. Throughout middle school, Jackson was frequently absent from school due to his disease. He loved playing tennis, but sadly, IBD kept him off the court. Today Jackson refuses to let ulcerative colitis define him. Thanks to medication and nutritional therapy, Jackson has reached and maintained remission. And he’s back to playing tennis! Your gift today will help us offer support to IBD patients like Jackson.

When Addy was eight, she started experiencing horrific symptoms. Her health just kept getting worse and she was diagnosed with severe Crohn’s disease. Today, Addy is a confident teenager who loves to help others who live with IBD. Addy found comfort at Camp Oasis, the Foundation’s weeklong summer program for kids with IBD. “The second I arrived, I felt at home. For the first time since my diagnosis, I was surrounded by people who truly understood me and my needs.” Your ongoing support will help other kids like Addy have great experiences at Camp Oasis.

When I was a young teen, I began having stabbing stomach pains and horrible acid reflux. It took more than a year before I was diagnosed with Crohn’s disease, and another 10 before I received the medical treatment I needed in order to live a full life. I am still coming to terms with the fact that I suffered unnecessarily for years in large part because my doctors followed an insurance protocol known as step therapy.

When I was 15 years old, my Crohn’s disease flared, and I lost half my body weight within six months because I couldn’t eat normal foods. I was so relieved when the nutrition shakes my doctor recommended allowed me to gain weight and get my Crohn’s under control. But I couldn’t believe that our insurance company wouldn’t pay, just because the nutrition wasn’t coming through a tube inserted in my body.

I treasure every month that my treatment works to keep my Crohn’s disease symptoms at bay, because my body produces antibodies that eventually render medications ineffective. I was beyond upset when, recently, my insurer stopped covering the effective medication I was taking, even though I had already tried and failed another medication they insisted I take first – a process known as step therapy, or fail first.

My 27-year journey with Crohn’s disease hasn’t been easy, but I manage my symptoms with an advanced medication. The drug manufacturer provides a copay card which has helped cover the high out-of-pocket cost. But now, our insurer won’t count this copay assistance toward our high annual deductible because our new policy has a copay accumulator program. I’m angry at the choices we must make to pay for my medication. For many other IBD patients, the only choice they have is to abandon the medication they depend on.

As a gastroenterologist, my patients do not often die because of the reason they came to see me. And if they do, it usually is not from inflammatory bowel disease (IBD), so Carol’s death hit me hard. Her death was preventable, and it motivated me to become an advocate for Medicare reform.

I was two years old when I was diagnosed with ulcerative colitis, a chronic, incurable inflammatory bowel disease (IBD). My childhood wasn’t exactly “normal”, but I managed okay until my symptoms flared in high school. The pain was horrible, but things got even worse when I couldn’t take the medication my doctor believed had the best chance of helping. I needed to try and fail another medication first — a practice known as step therapy.

I was cooking dinner for my pregnant wife when I started to feel progressively light-headed. I told my wife that we should go to urgent care, then collapsed on the kitchen floor. As I regained consciousness, I knew immediately that my Crohn’s disease was back. As a dad-to-be, my initial thought was, “I’m about to have a baby – I need to get better now!” But I didn’t get better quickly, because ultimately insurance-mandated step therapy stood in my way.