'Every day was hell': Kokomo man hopes his Crohn's misdiagnosis can help others

Apr. 3—It struck Rex Dobson like a gut punch from Mike Tyson — a pain in his lower abdomen like nothing he'd ever experienced before.

On a pain scale from one to 10, it was easily above 10.

"Every day was hell," Dobson said.

It was spring of 2016. Dobson had just undergone a colonoscopy. It showed nothing abnormal.

But Dobson went back to the doctor, and he received a CT scan of his lower abdomen and discovered his colon was inflamed. One biopsy and five days later, he was initially diagnosed with ulcerative colitis, an inflammatory bowel disease that causes inflammation and ulcers in one's digestive tract.

For the next year and a half, Dobson underwent infusions for ulcerative colitis.

But nothing was working.

Even worse, the pain was still present, and Dobson was losing weight at an alarming rate.

In 2016, Dobson weighed around 350 pounds. In a little over a year, he had dropped down to about 160 pounds.

"Once I hit 250, 225 pounds, I started to get pretty scared," he said.

Unhappy with the treatment he had been receiving and after dozens of doctor visits, Dobson went to IU Health Hospital in Indianapolis in October of 2017. The gastroenterologist there immediately had him hospitalized. He stayed for 11 days.

Dobson's state was so bad it was unclear if he would survive the hospital stay. Family was called to accompany him. His wife Elizabeth never left his side.

If the disease he had wasn't going to kill him, Dobson was contemplating doing it himself.

"I was in a pretty dark place," he said.

Dobson's trip to Indianapolis turned out to be a lifesaver. During his stay, he was correctly diagnosed with Crohn's colitis, one of the several forms of Crohn's disease.

CROHN'S DISEASE

Crohn's disease was "discovered" in 1932 by the gastroenterologist Burrill Crohn, Leon Ginzburg and Gordon Oppenheimer at Mount Sinai Hospital in New York City while the three were treating patients with inflammation of the small intestine.

The long-term disease causes painful swelling (inflammation) along the digestive tract, with the most common symptoms being abdominal pain and cramping, diarrhea and weight loss.

There's no known cause of the disease and, at the moment, there's also no known cure for it, though there are several ways to treat it.

Treatment often includes anti-inflammatory drugs, changes in diet, antibiotics, biologics or surgery to remove a damaged portion of one's digestive tract, though since the disease can be different for each person, treatment is often the same way.

If left untreated, Crohn's can be deadly through the complications the disease creates.

Similar to Dobson's case, many people with Crohn's or colitis are initially misdiagnosed or a doctor will cycle through several other possibilities before settling on a Crohn's or colitis diagnosis. Misdiagnosis is exacerbated due to the fact there's no single test for the disease.

According to the Center for Disease Control and Prevention, approximately 3.1 million people in the United States and an estimated 70,000 in Indiana are diagnosed with one of the three inflammatory bowel diseases.

LIVING WITH DISEASE

Since being diagnosed with Crohn's colitis, Dobson's daily life has fundamentally changed.

Because of the disease, he gets tired more quickly and experiences regular "brain fog." As such, he can work no more than eight hours a day. He eats strictly a fiber-free diet and can't eat anything with skin on it, nothing deep-fried and no vegetables.

"The things I love to eat, I can't anymore," Dobson said. "I eat a lot of meat now. A lot of meat, some rice and some dairy."

He's also stopped doing the activities he loves to do, including fishing and hunting, for fear that if he gets really bad and loses all his energy, he'll collapse and be unable to get up or help himself.

The pain is still there, though it's not nearly as bad. On a scale of one to 10, the pain is anywhere between a three and a six now. He's undergone more than 40 infusions to treat the disease.

Despite all that, Dobson is alive and has has committed himself to raising awareness of Crohn's.

In his spare time, he makes homemade potato chips — Rexie's Tasty Chips — and sells them at vendor events on the weekends. All the proceeds go toward the Crohn's & Colitis Foundation's Indiana chapter.

The foundation, started in 1967, is the largest nonprofit aimed at raising awareness and funding research to find a cure. In 2022 alone, the nonprofit spent $36 million in research across the world.

Take Steps is the Foundation's largest fundraiser of the year. The annual event is a walk that aims to "bring communities together — letting inflammatory bowel disease (IBD) patients and their families know that they're not alone."

In addition to Take Steps, the Foundation also has three support groups — two virtual, one in person — for those with Crohn's or colitis in Indiana.

Erin Lewis, the senior manager of fundraising campaigns and volunteer engagement for the Crohn's & Colitis Foundation, said those with an inflammatory bowel disease can benefit from socialization with others living with the same disease.

"Crohn's and colitis, since they're both gastrointestinal diseases, they aren't anything fun that someone wants to sit around the dinner table and tell their family and friends about, so they can be incredibly isolating diseases," she said. "Part of our role is to create those spaces for our patients is to find a community that knows what they're walking through."

Dobson said events and support groups put on by the foundation have done just that. He said he learned about the foundation through a Google search. Since then, he has attended multiple foundation events and has made new friends that he can feel comfortable to talk about the disease with.

"I know I'm not going through this by myself," he said. "Your spouse and family sees you, but they don't know the pain that you're going through or what your mind is going through."

This year, it named Dobson the 2024 Indiana Take Steps Honoree, meaning his story with Crohn's and colitis will be at the forefront of this year's Take Steps event in Indiana. The event is being held at 10 a.m. June 8 at Conner Prairie in Indianapolis.

Lewis said Dobson's story is relevant because it's a good example of someone with an IBD never giving up until the right diagnosis and that they receive the treatment they need to stay alive.

"My new slogan for life is 'never give up,'" Dobson said. "I almost did, and if I'd gave up, I wouldn't be here."

Tyler Juranovich can be reached at 765-454-8577, by email at tyler.juranovich@kokomotribune.com or on Twitter at @tylerjuranovich.