Finding meaning, connection in Crohn's battle

Vanessa Sher had been enjoying being mostly symptom-free from Crohn’s disease for several years when, in early 2024, she began experiencing stomach discomfort and other signs of a flare-up.

Already a patient at the UCI Health Inflammatory Bowel Disease Program, she consulted its director, internationally renowned gastroenterologist Dr. Nimisha Parekh. She had transitioned to the program several months earlier after feeling unsupported by her previous care team.

“She performed a colonoscopy and said, ‘You have a stricture, and it’s so severe, I think you need surgery.’”

In Crohn’s disease and ulcerative colitis, the two main types of IBD, the body’s immune system attacks the gastrointestinal tract. These chronic conditions are managed with medications, diet and lifestyle changes.

But when flare-ups occur, gut tissue can become more damaged, building scar tissue that eventually narrows the colon. Sher, then 32, had been battling Crohn’s since she was 10 years old, building scar tissue over more than two decades.

Parekh says it had to be repaired, otherwise Sher would be at risk for a blockage or colon cancer, since one side of her colon wasn’t visible.

A different ‘normal’

Sher hesitated at the thought of colon surgery. After all, she had gotten used to living with no energy. She could still hold down a full-time job and get along most days. Having lived with the disease since childhood, she had experienced much worse.

“As Crohn’s patients, we adapt. Our normal isn’t the same as everyone else’s because you have days you’re so sick, you can’t get out of bed, or you need to stay home to be near a bathroom,” Sher says.

“Anything above that is a good day.”

As the associate director of fundraising campaigns and volunteer engagement at the Crohn’s & Colitis Foundation, she has seen numerous positive surgery outcomes. But she was still hesitant and feared the worst.

“I was convinced that I would end up worse off if I had surgery.”

Taking the leap

All year, she pushed off the decision. By December, things had slowed down enough at work that Sher felt like it might be time. After speaking with her parents and talking it out with a therapist, Sher took the leap and scheduled a colectomy with Dr. Steven Mills, a colorectal surgeon at the Chao Digestive Health Institute.

On Dec. 9, Mills performed a colectomy, removing 73 centimeters of Sher’s inflamed colon and reattaching what remained.

Sher says she feels so good now, she wishes she had done the surgery sooner. To maintain her health and stay in remission, she’s taking a new biologic drug and working with a nutritionist at the Susan Samueli Integrative Health Institute, part of UCI Health, to identify how different foods make her feel.

She’s grateful to Mills, Parekh and the entire IBD team at the institute and is grateful she changed her care team.

“The team immediately made me feel supported. Switching to UCI Health is what made the biggest difference in my IBD journey.”

Celebrating progress

It’s a far cry from 2016, when Sher was in the midst of a flare-up so bad that she lost 50 pounds, quit her job and was forced to move back in with her parents. Feeling isolated and alone, she eagerly signed up for the Crohn’s & Colitis Foundation’s Take Steps fundraising walk.

“I needed to know that other people are a part of this, that I’m not alone,” she recalls of her motivation to being participating. Being surrounded by supportive individuals soon gave her the courage to start being open about her experience with others.

“At that point, I had not really told anyone that I had Crohn’s or IBD because it’s such a private thing,” Sher says.

“Nobody wants to talk about bathroom issues.”

Now as an employee of the foundation, it will all come full circle on May 17 at 10 a.m. at Mike Ward Community Park, when Sher celebrates how far she has come at the 2025 Crohn’s & Colitis Foundation’s Take Steps fundraising walk, where she’ll cheer on Mills, who is this year’s Honored Hero.

It’s recognition that’s well-deserved, says Sher.

“I personally know four people he has really helped. And there are so many more out there. He’s made a difference in a lot of people’s lives.”