Clinical Trial Patient Stories
In 2016, my daughter Madelynn (Maddy) was diagnosed with Crohn's disease. In January she began having really bad diarrhea. At first, I thought she had caught the stomach flu from my husband, who had had it the previous week, but the diarrhea continued on and on until we were at the three-week mark. She then started complaining about pain and I immediately knew something wasn't right. I started reaching out to various pediatric gastroenterologists nearby. To my surprise there were none close to where we live in Mission Viejo. We then found a doctor, located in Fountain Valley, CA. She immediately took her in and examined her. She told us that she had to do an endoscopy and colonoscopy to see what was causing all of the pain and diarrhea.
I was diagnosed with severe ulcerative colitis (UC) 12 years ago when I was 12. I honestly can’t remember what life was like when I was diagnosed. I remember originally being told I was lactose intolerant. As time went on and the Lactaid pills weren’t helping, my mom, who had UC herself, knew what was going on. All the symptoms I was experiencing were consistent with ulcerative colitis. A colonoscopy was performed and it confirmed that I had a severe case of it.
Who would have known that a trip to The Happiest Place on Earth would be the start of a lifelong journey? When my daughter Kira was 12 years old, she took a trip to Disney World with our family. While on the vacation of a lifetime, she became ill with severe diarrhea and vomiting. During the cruise, she was confined to her cabin and missed most of the activities on the ship. Once on land, Kira did not seem to get better.
My first time to ever hear the words “Crohn’s disease” was 19 years ago (2000) when a young woman that I attended church with made a request. Her name is Angela and she was searching for a person who would be available to drive her from Sheridan, Arkansas to Memphis, Tennessee every eight weeks for a treatment. At the time she was participating in a clinical trial for an arthritis drug, which had shown promise in treating Crohn’s disease patients.
On her seventh birthday, my daughter Alysa was diagnosed with Crohn’s disease. She claims it was her most memorable birthday - she was met with so much love from everyone at CHOA (Children’s Healthcare of Atlanta) at the Scottish Rite Hospital.
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? For a young woman at the age of 14, it was devastating. I didn’t want to hear anything about the disease, talk about it, or have anything to do with my friends. I was very confused and angry at the world. Being athletic and not being able to play the sports I wanted to play made things worse.
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.
My son Christopher is 11 years old and has Crohn's Disease. He was recently diagnosed this past January of 2018 at age 10. Up to this point in time he always had a few issues when it came to his digestive system. Ever since he was born he's suffered from constipation. Sometimes mild and sometimes more severe, we tried over the years to treat this, but nothing ever worked. He's never had a good appetite and much of the time exhibited difficult behavior which I attributed not only to his strong will, but also to him not 'feeling well.'
In April ‘17, I was your typical 18-year-old; trying to figure out what to do with my life. Then, I seemed to be atypical. The majority of society excretes normal looking waste, while I was excreting red waste in excess and this issue didn’t go away. Finally, I was diagnosed in May ‘17 with severe ulcerative colitis by a pediatric gastroenterologist [GI] at 19. I was on oral and/or liquid medications/supplements, one of which was Iron supplements for about 3 months. The medications for my colon worked fine, but they weren’t long term medications. This pediatric GI doctor didn’t seem very knowledgeable about IBD [inflammatory bowel disease]. After using up my medications, not seeing the Pediatric GI, and changing insurances, I finally ended up seeing 2 adult gastroenterologists in the month of November ‘17. The 1st one told me to see the 2nd one because “my case was too severe to know what to do”. When I saw the 3rd gastroenterologist, my Iron levels were very low again since I was on no medications until I started the infamous IBD steroid when I saw the 2nd GI doctor.
I was diagnosed with Crohn’s disease in 1993 at the age of 13. A common steroid let me carry on and go to school but every time I tried to switch to a new medication, the results were less promising. I spent three years yo-yoing up and down on this steroid. We lived in the mountains of Colorado and had to travel about 4 hours to the nearest gastroenterologist. This made each medication change a huge ordeal for me and for my family.
While many patients enroll in clinical trials as a last resort, my clinical trial participation began early on in my journey with Crohn’s. After several visits to the emergency room for abdominal pain and various tests with no definitive answers, I finally received my Crohn’s diagnosis in the fall of 2017. It came as a result of a capsule endoscopy used to record pictures of my digestive tract. I remember my doctor explaining that this test entailed a slight risk of the capsule becoming lodged in the digestive tract. Well, I was one of the lucky few where the capsule became “stuck”. For several weeks, I had numerous x-rays to monitor whether I had passed the capsule. At each x-ray, I would cross my fingers that the capsule would be gone. Unfortunately, the “finger-crossing” didn’t work and I was put on a medication in the hope that it would reduce the inflammation enabling the capsule to pass on its own.
I was diagnosed with Crohn’s Disease at 17 years old as a senior in high school and completely refused to believe that anything was wrong with me. I quickly went through medication after medication until graduating to biologic medications. I had some limited success on biologics but even those medications were not helping to heal my digestive system.
In November of 2014, an enormously painful half-dollar sized perianal abscess took me by surprise. At the time, I had no idea what an abscess was, or where the perianal region was, so I went to my internist to learn more. (For readers who don’t know, a perianal abscess is when a collection of pus develops near the anus). He directed me to a colorectal surgeon, who insisted that we immediately cut and drain the abscess. After two surgical attempts, he surrendered to the uncontrollable buildup of fluid, and passed me along to another surgeon.
When I was diagnosed with ulcerative colitis as a twenty-year old, I never thought I would go so far as enrolling in a clinical trial to manage my disease. I was actually very resistant to most medications in the beginning. It’s hard to come to terms with being dependent on medication for the rest of your life when you are supposed to be in your prime. I felt like my body was betraying me.
From a young age, I knew that I wanted to be a mother. But, when I began experiencing symptoms of Crohn's disease at age 21, I became worried about how my future may look. Knowing instinctively that I wanted to be well to have a child, I set out on a mission to heal the angry disease that was taking over my intestines. After struggling on lower-tiered medications, a hospitalization for an obstruction led me to realize that the deep healing that I desired would only come using biologic medications. But I wanted to have kids soon; would using these medications during a future pregnancy be safe? Research into the topic wasn't as plentiful as I would have liked, and the message boards and mom blogs were full of more questions than answers. As it would turn out, I would need to participate in the research if I wanted to help answer this question.
I was diagnosed with mild ulcerative colitis in early 2010. Though I took the prescribed medications the UC was continuous and worsened over the next three years until I had exhausted all approved treatments to no avail. A specialist at UCI recommended I consider a clinical trial medication.
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