Our Stories

These special people inspire us with laughter and wisdom. Read their personal stories -- or share one of your own.

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Clinical trial story

Carolyn’s Story

I never thought I would be someone who would be a part of a clinical trial. Doctors can only provide so many answers, but there was still a chance that this trial could help me, and in the process, I would be contributing and helping the future of IBD.

Clinical trial story

Emilia’s Story

Sabrina's daughter, Emilia, was diagnosed with Crohn's disease at just 8 years old. Since then, Emilia has participated in three clinical trials in the hopes of helping other children with IBD.

Clinical trial story

Katie’s Story

When there are no other options aside from a major surgery, the chance of finding something that can make a real difference is like the light at the end of the tunnel.

Clinical trial story

Stephen's Story

I was diagnosed with ulcerative colitis when I was 21 years old. I initially responded to oral treatments well, but my quality of life began to plummet about a year and a half after I was diagnosed. I was malnourished, had no energy, and I was using the bathroom close to 20 times a day. I was hospitalized with a case of Clostridium difficile (C. diff). At that time, the doctors gave me the option of either trying biologics to calm the inflammation or removing my colon. I chose surgery because I thought it would end the pain and suffering that I had been experiencing without the risk of potential side effects related to biologic medicines.

Clinical trial story

Vishal’s Story

I was 6 years old when I was diagnosed with indeterminate colitis in September of 2005. What happened during the first few years with my disease is a combination of my memories and what my mom has told me. For three years, I was in and out of hospitals, trying different medications, and hoping to reach the light at the end of the tunnel called remission. Eventually, after trying multiple medications including a biologic, I finally found a treatment combination that worked.

Clinical trial story

Alex's Story

My story begins in January of 2009 at the age of 12. I began having symptoms of Crohn’s disease in November of the previous year, and it took a few months until I was officially diagnosed. After being diagnosed, I took several medications that did not work for me. I was still losing weight, still in a lot of pain, and overall was just not able to live life like a normal 7th grader. Eventually my parents and I agreed to enroll in a clinical trial for a subcutaneous biologic medication. I was initially nervous about participating in this trial because I was only 13 years old, but I knew if it was being studied, there was belief that it could really save my life.

Clinical trial story

Jill's Story

After being sick for several months with symptoms including fatigue, stomach pain, and diarrhea, I was diagnosed with moderate-to-severe ulcerative colitis when I was 15. Unlike a lot of patients, I was diagnosed fairly quickly, but only after a doctor suggested having a colonoscopy. After receiving my diagnosis, I started a corticosteroid medication for several months. My doctor explained how my colonoscopy showed I was much sicker than I presented and, even though things had gotten better, I needed to be on a maintenance medication. I started an aminosalicylate. I made my treatment decision based on what was covered by insurance and how much out-of-pocket expenses we would incur.

Clinical trial story

Neda's Story

I was diagnosed with ulcerative colitis when I was 37. It came as total shock, and I even told my doctor he was wrong. Reflecting to the weeks prior to receiving a diagnosis, I had significant symptoms, including weight loss, which should have been a clue. A few weeks after my diagnosis, I had a colonoscopy and changes in medications before my initial flare subsided. Over the next several years, additional changes were made with my treatment regimen and my condition was monitored. I had many unpredictable flares, but none were as difficult and stressful as the first. The difference with subsequent flares was that I knew what I was dealing with.

Clinical trial story

Melissa's Story

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.

Clinical trial story

Madelynn's Story

Tania H., a Clinical Trials Ambassador shares her daughter, Madelynn’s story.

Clinical trial story

Michelle's Story

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.

Clinical trial story

Angela's Story

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.