Taking steps to cure Crohn’s and Colitis

Photo Provided by the Crohn’s and Colitis Foundation of America

Alexa Jo Palmer has a resoundingly positive outlook on her condition. It could be because of her warm and welcoming Catholic School just off the Parkway at 19th and Wood streets, J.W. Hallahan Catholic Girls High School. It could be because her loving father takes her to countless Phillies games and the staff there support and love her, always offering caring concern for her comfort. It could be the life-changing Camp Oasis of Pennsylvania experience she had at Nock-A-Mixon in Kintnersville, PA, where she was a Leader in Training last summer; she was surrounded by youths just like her, where experiencing treatment and symptoms from Colitis isn’t stigmatized or a source of embarrassment.

Crohn’s and Ulcerative Colitis are very challenging Inflammatory Bowel Diseases (IBDs) that affect the gastrointestinal (GI) tract in sufferers, and it’s extremely unpleasant. And maybe a little embarrassing, too. But Palmer, a resident of the 1300 block of Moore Street and a 2015 SPR Rising Star, does her best to stay positive living with Colitis. At press, Palmer has raised nearly 97 percent of her $5,500 fundraising goal for the walk.

“It’s an embarrassing disease and I have my ups and downs, but I’m so comfortable with it,” she explained, and was empowered to discuss her condition with classmates and teachers especially after her Camp Oasis retreat. At the camp, she “got to meet kids with my disease and be more comfortable and not as embarrassed. Everyone’s going through the same thing,” Palmer said. “It wasn’t like sick people camp – we’re just a bunch of regular kids doing normal activities.”

Camp Oasis, by the way, takes place this summer Aug. 15-20 for campers entering grades four to 12.

Palmer is the Crohn’s and Colitis Foundation of America’s (CCFA) Young Honored Hero at this weekend’s Take Steps walk at Citizens Bank Park, 1 Citizens Bank Way, and the Philadelphia and Delaware Valley Take Steps is the country’s largest. The walk raises awareness for the disease, which affects 1.6 million patients, one in every 200 people. CCFA raises nearly $50 million from the Take Steps walks across the country and in 2015 alone, CCFA served almost 600,000 individuals through education and support services.

“It’s not a fun disease and it’s a disease that you can’t see,” Dawn Halsey, the Philadelphia walk coordinator, said. “You can’t see how much pain and suffering our patients are experiencing. And it’s definitely not a disease that people talk about.”

But on this day, patients make light of their condition to lessen the seriousness they experience on a regular basis. At last year’s walk, “teams” came up with creative team names: Emmy’s Crohn’s Crushers; Team Semicolon!; The Irregulars; Glamour & Guts; and OMG: Oh My Guts!

“I have an autoimmune disease with ulcers in my colon and I can only eat certain food, because my colon can get inflamed and cause me to go to the bathroom more frequently” is how Palmer puts it to a stranger. She’s a little nervous to make a speech at this weekend’s walk, but also honored and excited. She’ll address “what I went through and what I’m still going through and maybe encourage people – it’s such a cool thing to be able to raise money for research to help find a cure.”

Palmer received treatment at St. Christopher’s Hospital for Children in Juniata Park. She says it was such exceptional care that she didn’t want to leave. In fact, in the fall she’s ready to enroll at Widener University in Chester, where she’ll study nursing because of how wonderful her caretakers made her feel.

“My time in the hospital, I loved it there, it kind of changed my whole career” aspirations, the Passyunk Square inhabitant said.

“It’s a really long-term disease, and we see kids as young as infants who can develop inflammatory bowel disease and the sickest patients develop it much earlier in life,” Dr. Harpreet Pall, a gastroenterologist at St. Christopher, said. “It can be a horrible disease and the cases are much more common than they were before, it’s becoming more common especially in children.”

When Palmer came to St. Christopher, it was after years of unsuccessful appointments with physicians who didn’t think to request a colonoscopy for her. And early diagnosis can help a great deal.

At 15 and 16, she was prescribed steroid treatments and remicade infusions, treatments that forced her to gain weight and lose mental and emotional clarity.

“Sometimes the side effects of treatment can sound scary, but you have to look at the big picture,” Pall explained. “It’s always a risk-benefit discussion, and we involve patients and families and parents in the decision-making process – we make a decision together, jointly, in the best interest of the patient.”

Every patient is unique with different sources for flare-ups and Palmer often keeps a food diary to document what works and what doesn’t. In the small intestines, though, Crohn’s and Colitis patients should universally avoid “nuts, seeds, and popcorn – that’s a no – they can get stuck,” Pall said.

Palmer says she stays away from rich, creamy foods. And during flare-ups, she’s forced to eat loads of chicken and rice “and it’s horrible,” she said. “I eat everything but I probably shouldn’t.” At Phillies games, she opts for chicken fingers and fries.

Crohn’s is significantly more serious and destructive than Colitis. Crohn’s affects the entirety of the digestive tract, from the mouth to the anus. But Colitis largely affects the large intestine, or colon, and sometimes other, higher parts of the digestive tract. Crohn’s can be debilitating and is far more powerful than Celiac Disease or Inflammatory Bowel Syndrome (IBS).

“IBS means there’s no inflammation,” Pall said. But with Crohn’s or Colitis, patients “may have blood in their stool, experience weight loss, severe abdominal cramping, mouth sores, fevers, arthritis sometimes.”

What’s the cause? We’re still not even close to certain. It’s a combination of genetics, exposure to certain bacterias, and perhaps environment. Largely, IBD sufferers get diagnosed between the ages of 15 and 35. Pall even hinted that, perhaps, a serious aversion to getting dirty or say playing in mud may hinder children from being exposed to the bacterias that are natural and healthy.

The walk “definitely raises awareness,” Palmer said, which is crucial. And as she and her family have found, lots of friends and family might have it but shy away from admitting it.

“They have it and they haven’t said anything – ‘Oh, you have it!’” is a common response, followed by “I have it or my brother has it,” she added. The silver lining is she’s found some purpose and writes, in attending nursing school, she’s “on her way to help others who suffer from these diseases.”

Contact Staff Writer Bill Chenevert at bchenevert@southphillyreview.com or ext. 117.