Zaria opens up about her years-long Crohn’s journey and how the Crohn’s & Colitis Foundation has been a source of education, solidarity, and support every step of the way.
Having struggled with Crohn’s disease for more than half her life, Zaria Wilson, 32, knows a thing or two about the disease. But when she was diagnosed at age 14 after suffering ongoing pain that she suspected was the result of a long-lasting stomach bug, everything was new.
After diagnosis came surgery, then a month in the hospital to recover. During this time, the staff lent her a laptop so she could retain some semblance of normalcy. That’s when she began researching and discovered the Crohn’s & Colitis Foundation.
“In the beginning, it was a very traumatic diagnosis because it took a matter of three months of going downhill and needing a surgery to resolve some of the issues going on in my gut that medicine couldn’t conquer as they hoped,” explains Zaria, who grew up in Montville, Connecticut and is now based nearby in Norwich. “The Crohn’s & Colitis site had all the information I needed to understand what the disease really means. That was 18 years ago, and I’ve been involved in the foundation ever since.”
Fast forward to today, and Zaria is gearing up for the 2024 Mission Possible Fundraiser on September 7, 2024 where she’s going to be honored alongside IBD healthcare provider, Amanda Hyne.
Below, Zaria opens up about her years-long Crohn’s journey and how the Crohn’s & Colitis Foundation has been a source of education, solidarity, and support every step of the way.
What has your Crohn’s journey looked like over the past 18 years?
It’s been a very long journey. First, I had to have surgery to resect my lower small intestine (ileum), valve (caecum), and start of the large intestine (ascending colon). This also meant my appendix needed to be taken out. Things improved after that, and once my body was stabilized, they were able to send me home to continue recovery. My treatment plan at the time was steroids, medications to counteract the symptoms/side effects, and all sorts of additional supplements to boost my intake of nutrients. I was on a biologic medication and had a pretty stable way of life for about a year and a half before having an allergic reaction that resulted in anaphylaxis. So I unfortunately had to switch to another medication, which gave me chest pains. So I switched again and have been on this most recent drug for close to 15 years.
Beyond your treatment, how has Crohn’s affected your day-to-day life?
It varies for everyone — some people can have symptoms of chronic constipation, and for others it’s diarrhea. I have the latter, but I’ve found that certain things help like prioritizing high-protein foods and avoiding a lot of roughage. Any time I eat a salad or vegetables that haven’t been cooked to mush, I have to weigh how I want to feel later and sit with the consequences of the pain. My “cheat” days are when I have a salad!
READ MORE: Guide To Crohn’s Diet: Foods To Eat & Avoid
How has the educational content from the Crohn’s & Colitis Foundation supported you during this time?
They have so many resources available on the website — not only on the science behind the disease but also resources to help you advocate for yourself. There’s a lot of community outreach material, and they help patients and caregivers find support groups. My husband has also used the website to do research on my behalf.
How did you start getting more involved with the Crohn’s & Colitis Foundation?
In the beginning, I was mostly using the site for education, but then I went to a couple of symposiums with my mom to learn more about the science behind Crohn’s and the latest medical advances. And I learned about Camp Oasis, which is a sleep-away camp for those with Crohn’s. I started to attend one year after my diagnosis, and it had such an impact on my life. I made life-long friends and even have a tattoo of the camp logo on my arm to remember the great times and honor those who are no longer with us. Ever since then, I’ve attended the foundation’s fundraising events and set up donations through Facebook on my birthday.
Tell me more about the annual fundraising events that Crohn’s & Colitis Foundation hosts!
At the first annual Mission Possible event years back, my doctor (Dr. You Sung Sang) was receiving the Doctor Of The Year award, which I thought was really neat. I mean, he’s my doctor so I knew he was the best but at least everyone else could know now too! That drove me to attend the fundraiser, which was at an orchard. It was a really family-friendly event — there were corn mazes, a driving range, a silent auction, and a photo booth. Attendees donated in honor of how Crohn’s & Colitis has affected their life; I donated to the life-changing camp so it can remain free of charge.
I don’t know too much about the programming for this year’s Mission Possible event, but I know it’s going to be circus-themed! It’s being hosted by the Westchester Circus Arts, and I hear there’s going to be carnival games, bottle toss, raffles, and food.
Where do you hope the science on Crohn’s will be five years from now?
18 years ago when I was first diagnosed, there really weren’t many options — just Humira and Remicade. Now there’s so much more.
They’re making more and more advancements every single day and every single year, and when something new is available to me, I will hop on it and I will try it. In the meantime, all I can hope for is funding so that these advancements can take place within my lifetime.
Local Infusion Editorial : Aug 20, 2024 9:00:07 AM
