Camas woman breaks her silence on Crohn’s disease

• What: Take Steps for Crohn’s and Colitis, a fundraiser for the Crohn’s & Colitis Foundation of America, which has a Northwest chapter that hosts events in Portland.

• When: 2 p.m. May 17.

• Where: Oaks Amusement Park, 7805 S.E. Oaks Park Way, Portland.

• Information: Take Steps website, www.cctakesteps.org. There you can register to walk, create or join a team, and make a donation to a team. Crohn’s & Colitis Foundation of America Northwest chapter website, www.ccfa.org/chapters/northwest

Susanna Meeks knew something was wrong.

She was spending more time in the bathroom during the night than she was sleeping. She was exhausted from the lack of sleep, and she was experiencing terrible pain in her abdomen. She was nursing her 6-month-old son, but he wasn’t gaining weight; doctors told Meeks her milk wasn’t nourishing the baby.

But she was too busy to be sick. Her then-husband was deployed in Iraq, serving his fourth tour overseas. She was a military wife, caring for her son and 2½-year-old daughter, and she needed to hold down the fort while he was away.

She was also fearful of what doctors would say.

“I was scared to get checked,” the Camas woman said. “I just thought the worst. I thought cancer.”

Meeks told her mom about her symptoms, even revealed she was having accidents because she couldn’t get to the toilet in time. Her mom insisted Meeks see a doctor.

Meeks, who was 35 years old at the time, had her first colonoscopy. In the fall of 2009, she was diagnosed with ulcerative colitis. Several years later, in April 2014, Meeks learned she had Crohn’s disease. That was also when Meeks learned about the Crohn’s & Colitis Foundation of America and finally talked to people about her disease.

“I really suffered in silence for four years,” said Meeks, now 40.

Crohn’s disease and ulcerative colitis are inflammatory bowel diseases — not to be confused with irritable bowel syndrome, which is a common disorder of the large intestine. More than 1.6 million Americans have the debilitating diseases, with as many as 150,000 of those diagnosed being younger than 18, according to the foundation.

Crohn’s disease causes inflammation of the lining of the digestive tract that may lead to life-threatening complications, according to the Mayo Clinic. The inflammation often spreads deep into the layers of affected bowel tissue and can cause abdominal pain, severe diarrhea, fatigue, weight loss and malnutrition.

Ulcerative colitis causes long-lasting inflammation and ulcers in the digestive tract. Ulcerative colitis affects the innermost lining of the large intestine and rectum, according to the Mayo Clinic.

There’s no known cure for Crohn’s disease or ulcerative colitis, but therapies can greatly reduce symptoms and even lead to remission. The exact cause of both diseases is unknown, but some factors, such as heredity and a malfunctioning immune system, likely play a role in its development, according to the Mayo Clinic.

After Meeks was diagnosed with ulcerative colitis in 2009, she was put on a cocktail of drugs to send the disease into remission and prevent future flares. Already thin, Meeks lost more weight, but the steroids made her face rounder. Her thick hair was falling out, leaving her with thin, unhealthy hair.

Meeks was depressed and felt isolated after moving to Kansas when her then-husband returned from Iraq. They divorced a few months later, and Meeks returned to Camas with her kids four years ago.

Since her diagnosis, Meeks has experienced flares of symptoms off and on. They often come on quick, with symptoms — diarrhea with bloody mucus, severe abdominal pain and nausea — hitting her hard. The symptoms leave her feeling exhausted and dehydrated, sometimes to the point of hospitalization.

During a flare, Meeks is often hesitant to eat because that inevitably leads to multiple trips to the toilet. She’s anxious about leaving the house because she may not be able to make it to a toilet. And she’s too tired and nauseous to do anything active.

When Meeks experiences a flare, she calls her doctor and gets prescribed more medications to send the condition into remission. It typically takes four to six weeks before all of the symptoms subside. Meeks has at least three flares a year.

“I don’t really have it in control,” Meeks said. “Since I’ve been diagnosed, I haven’t felt like myself.”

Still, Meeks has managed to avoid more invasive treatment.

“I’m thankful I’ve never had any surgeries,” she said. “I’ve never had to do feeding tubes.”

After Meeks’ diagnosis changed last year, she began attending support group meetings in Portland offered by the Crohn’s & Colitis Foundation of America. For the first time, Meeks began to open up and tell people about her disease. She shared more with her parents. She told friends what she was going through. She posted about Crohn’s disease on Facebook.

Meeks participated in last year’s Take Steps for Crohn’s and Colitis walk, raising $750. This year, she’s been named one of the event’s Honored Heroes — an inspiring person to represent those with Crohn’s and colitis — and hopes to raise $1,500 before the May 17 walk.

The support Meeks received from the group has also encouraged Meeks to reach out to others living with an inflammable bowel disease diagnosis. She doesn’t want anyone to suffer in silence like she once did, and she vows to not let the disease stop her from enjoying life with her children, 8-year-old Ava and 6-year-old Niels.

“I’m not going to miss out,” Meeks said. “I’m still going to live my life.”