Why I Advocate: Grant’s IBD Story

Having support from people who understand is key.

Grant Filowitz grew up in a family of people who suffered from frequent stomachaches. When his stomach hurt as a child, he figured it was just something he had to deal with.

Eventually, he saw a gastroenterologist who told him he had irritable bowel syndrome (IBS), which is a group of intestinal symptoms — cramping, gas, bloating, constipation, diarrhea — that often occur together. At the time, his symptoms weren’t severe enough to warrant any other tests.

“There are theories about what causes IBS, mostly related to how the nervous system interacts with the gut and fecal microbiome,” says Filowitz, who’s in medical school.

“Most people experience bouts of diarrhea or constipation, but there isn’t much to do for it besides antidiarrheal and antispasmodic medications, and lifestyle changes,” he says. “There isn’t a real test for it, but I’m sure I had it growing up as I always had a ‘bad stomach.'”

It wasn’t until about 2 years ago, during his second year of medical school, that Filowitz noticed blood in his stool and was experiencing a lot of fatigue, in addition to his usual IBS symptoms.

He visited another GI doctor who diagnosed him with inflammatory bowel disease (IBD), a group of autoimmune disorders, including Crohn’s disease and ulcerative colitis, that leads to prolonged inflammation of the digestive tract.

Unlike IBS, IBD can lead to severe complications — such as intestinal ruptures, bowel obstructions, and an increased risk for colon cancer.

The treatments he tried worked for about a year, until a flare-up landed him in the hospital for 3 days.

“I got tons of prednisone in the hospital and lost 30 pounds,” says Filowitz. “I’m pretty small to begin with, so I didn’t have much to lose.”

Over the next 2 years, his diagnosis would change from ulcerative colitis to Crohn’s disease and back. As he explains it, there’s a spectrum from ulcerative colitis to Crohn’s, and his condition falls somewhere in the middle.

He was just happy to have a diagnosis that could put a name to the symptoms he had been experiencing for so long, regardless of which it was.

“The treatment I’m on has me feeling normal again, and to me that matters more,” Filowitz says.

Since the flare-up, he has changed his diet and uses the drug Humira, which has kept his symptoms at bay.

“Like many people with IBD, it’s a constant challenge to manage symptoms,” Filowitz says.

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A call to help others with IBD

Filowitz always had a love for science. In college, he went back and forth between continuing to study human or animal medicine. Ultimately, he chose the people route.

In 2017, he enrolled in medical school.

“I really enjoyed science and using science to help others,” says Filowitz. “In my personal statement for medical school, I wrote that there were a couple of events in my life where I saw someone else in a situation, like a car accident, and felt helpless. I hated that feeling.”

“That’s why I wanted to get into medicine — to use that education and remove that feeling of hopelessness for myself and others,” he says.

His personal experience with IBD influenced his decision to become a gastroenterologist after he graduates from medical school.

“I can use my own experience to be more empathetic toward my patients. Often times, patients become symptom A, B, C, D, as opposed to a real life person who is experiencing those symptoms,” he says. “Being on the patient side versus just the doctor side gives me a different perspective, and I can relate with people who also experience GI issues.”

Serving as a community ambassador

Grant’s not waiting until he becomes a gastroenterologist to advocate for others. He recently teamed up with Bezzy IBD (formerly IBD Healthline), a free community for people living with Crohn’s disease or ulcerative colitis.

As an ambassador for the app, Filowitz offers one-on-one support and group advice to users by sharing his personal story, offering advice, and giving support to those who are newly diagnosed or have been living with IBD for years.

“I like the opportunity to connect with others. As a medical student, it was still scary for me to get a diagnosis, so it’s unique for me to help people in a situation I was in,” he says.

He learned about the community while looking for online support for himself. After using Bezzy IBD, he found the message board helpful and reached out to a community guide to see how he could get involved.

As an ambassador he leads live group discussions on a variety of topics, including treatment and side effects, lifestyle, career, relationships with family and friends, diet, emotional and mental health, navigating healthcare, and more.

“It’s great for people to be able to interact with others who experience what they’re going through and vent,” Filowitz says.

“For chronic disease specifically, you know you’re going to be dealing with this for a long time, so the mental health aspect is just as important as the regimen of your medication and diet,” he says. “Having support from people who understand is key.”

While the app brought Filowitz personal comfort when he was first diagnosed with IBD, he says it continues to provide him benefits as an ambassador, too.

“The app is perfect for people who were like me and are just diagnosed, have no idea what’s going on, and who need support. But it’s also good for people who have lived with IBD for years and who still need support,” he says. “No matter where you are at in your journey, it’s a great place to share stories and ideas and learn from others going through similar things.”

Article originally appeared on August 25, 2020 on Bezzy’s sister site, Healthline. Last medically reviewed on August 14, 2020.