I Wish I Had Known: Ulcerative Colitis Patient Dishes Out Life Lessons
Grady, now 21 years old, was diagnosed with ulcerative colitis (UC) in the Fall of 2015 as a freshman in college. Here, he tells Discover Therapies the lessons he’s learned over the past 3 years, sharing insight on UC meds, doctors, and the journey towards healing.
Ulcerative Colitis Diagnosis
In his first year at Louisiana State University in Baton Rouge, Grady thought that his biggest challenge would be writing his term papers—he never guessed that he’d be adding an autoimmune disease to his semester checklist.
Like many UC patients, Grady’s first sign of ulcerative colitis was bleeding. However, he thought that it might be food poisoning, so he lived with it for a week before visiting the doctor.
At the university clinic, the doctors thought it might be a rupture or tear, but after his symptoms didn’t improve, he had lab work done and was referred to a gastroenterologist (GI). The GI checked for hemorrhoids before finally opting for a colonoscopy, which resulted in an ulcerative colitis diagnosis.
“I’d never heard of ulcerative colitis before”, Grady admits.
He guessed that he might have seen a commercial mentioning Crohn’s disease (a related inflammatory bowel disease)—but that did not prepare him for the following three years of trial and error as he learned to manage the symptoms of the disease.
Finding a UC Medication That Works
An autoimmune disease characterized by chronic inflammation in the intestine, UC can be triggered by any number of factors, including stress. And as a freshman in college, Grady experienced plenty of stress.
Already, he found it difficult to manage his class load due to symptoms of UC. Fatigue made a 7am wake-up call all the more challenging. In addition to the stress of college life, he was stressed about his ulcerative colitis symptoms flaring up at unexpected moments.
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“I wondered if I’d have to rush out to the bathroom in front of 200 people. It’s hard enough to write a term paper—and even harder when you’re getting up to go to the bathroom 8 times a day”, Grady explains.
As many UC patients have done, Grady tried a progression of multiple medications for ulcerative colitis. He started with Lialda (mesalamine) and moved on to Uceris (budesonide) and then prednisone when it proved ineffective. After researching the side effects of prednisone, Grady chose to switch to a different medication, though he had to take prednisone in the meantime to manage flares. He spent the following year on Remicade (infliximab), but after a C-dif infection (Clostridium difficile infection) that occurred around his fourth Remicade infusion, he started taking Entyvio (vedolizumab).
Grady’s Advice for Ulcerative Colitis Patients
In the three years since Grady’s diagnosis, he has encountered significant challenges and has learned many lessons about UC treatment through trial and error. For patients who are newly diagnosed with UC, he shares his personal insight:
Take an active role in your health care
“Advocate for yourself. Ask questions,” advises Grady, stressing the importance of asking your doctor for all of your options before making a medical decision.
“If you don’t want to take Humira every few weeks, speak up. Don’t just go along with what is said. It’s a shared decision—be part of it.”
Consider everything in your toolkit
For Grady, finding the best UC treatment for his particular situation has been an continuous exercise in education and persistence.
For example, before interviewing with Discover Therapies, Grady was hesitant to participate in a clinical trial for new IBD treatments because he feared that the new “untested” medications would pose additional risks. After exploring the research and learning more about the safety regulations of clinical trials, he’s says he’s now “very open” to joining a clinical trial.
“For someone who has failed a lot of different treatments, it’s great. Clinical trials are so targeted, so you need to know if you qualify first—but it’s a great option if you’re adverse to surgery.”
Join ulcerative colitis support groups
From early on, Grady sought out support groups for people with ulcerative colitis. He advises new patients to look for local Facebook groups or online support groups where you can read about other patients’ experience.
He has also joined large community events in person, including the Crohn’s Colitis Foundation Charity Walk. He even applied to join the National Council of College Leaders through the Crohn’s and Colitis Foundation. He has served as a counselor at Camp Oasis (another program through the Crohn’s Colitis Foundation), a summer camp for young people with IBD who come to share a positive experience with other kids and teens with IBD from all across the country.
“Be hopeful”, he reminds us.
With more honest and empowering stories like Grady’s, the future for UC patients is indeed looking brighter.