Crohn's, colitis support group heals hearts, minds

TAMPA (FOX 13) - One by one, members of the Crohn's and Colitis support group updated their progress and shared their feelings during a group session in the Bay Area.

"People say, 'well, how are you feeling?' You can't really describe it to anybody else because they don't understand," Hunsinger said.

Her words set the tone for group conversations about the struggles of gastrointestinal disease and how the largely invisible disease creates constant worry, as well as physical pain and discomfort.

FOX 13 Sports' Merissa Lynn will be emceeing Tampa Take Steps for Crohn's & Colitis the afternoon of Saturday, October 22 at Cotanchobee Fort Brooke Park. For more information, visit http://online.ccfa.org/site/TR?fr_id=6500&pg=entry.

Mark Dyar’s symptoms began when he was 12. At age 24 he spent nine months in the hospital. Since then he’s gone through numerous surgeries and a cabinet’s worth of medications. He underwent five surgeries related to detrimental side effects from steroid medications, alone.

Today, he has only a fraction of his intestines left. Like many other members in the support group, Mark said when his symptoms began during childhood, people thought he was exaggerating.

"They would look at me like, 'you're not sick.' They didn't really understand until I started throwing up blood or going to the bathroom and it was all blood," he recalled.

But when Dyar, Hunsinger and the rest of the group enter this room, skepticism is replaced by friendship, laughter and encouragement.

LINK: Colon removal blessing for ulcerative colitis patient

William Connell, who also has Crohn's, has maintained his career in law enforcement while battling the symptoms of his disease. He served some words of perspective to the group.

"This doesn't define who we are. It's something we deal with, but we're not defined by this," he said.

Many medications, little relief

While many of their symptoms - pain, bloody diarrhea and fatigue - are similar, each member described their treatments, which all seemed to differ.

Hunsinger said an intravenous drug called Remicade has changed her life. Prior to its FDA approval, she was on prednisone, and other less effective medications that caused multiple hospitalizations.

Debra Ferrell told the group her Remicade infusions were beginning to fail, just after going into remission.

Jody Matheus, a school teacher, removed dozens of pills from her purse. She needs them to keep her Crohn's in check.

Some point to their medications as a cause for the most commonly shared symptom of gastrointestinal diseases like Crohn’s and ulcerative colitis: overwhelming fatigue. Anemia due to chronic blood loss is another reason to which sufferers point.

"I stopped all my meds February 2. [This] will be my third year. I just gave up on it," Mark Dyar confessed, but said he now has more energy.

When symptoms take over normal life

Shane Sexton was diagnosed with Crohn's at age 25. Unlike ulcerative colitis, which mainly affects the large intestine, Crohn's can strike the entire gastrointestinal track, from the mouth down.

"It hit quick and it hit hard. At first I thought it was going to be ulcerative colitis. I thought, 'there could be worse things. I could have Crohn's,' and then you don't know? I was diagnosed with Crohn's," Sexton said.

LINK: Boy's cancer scare turns to lifelong GI struggle

Sexton got so sick, he was unable to meet the demands of his job as a mechanic, and then lost his medical insurance. The inflammation in his small intestines created fistulas, or tunnels, connecting it to his bladder and out through his abdominal wall. With no insurance, he was forced to wait over a year for corrective surgery.

"It got to the point that I was home most of the time, because you're just so tired, didn't really have the strength to anything, barely had the will to do anything," he explained.

Strength in numbers and understanding

Sexton is now back to work and credits his family and this room filled with friends, in helping him through the most difficult times.

"Don't give up hope - as corny as that sounds, don't give up hope," he said.

For many suffering with Crohn’s and ulcerative colitis, hope and support are keys to recover.

Shelly Holder had surgery to remove her entire colon, and said she relied on members of the support group for understanding.

"I don't think I could have made it all those years without the support of the people here," Shelly Holder says.

Kathy Scott, the group's leader said the support continues long after walking out the door.

"We are a group and we are so strong, and I know if we call anybody, they'll help us," she said.