The pain is nearly constant. Pills can contain it. But at its worst, it's debilitating. It's as if someone has plunged a knife into the abdomen and twisted. Everything else ceases except the pain. Walking and talking become difficult.
This is how Rita Graziano describes the pain she's lived with for seven years. She has chronic pancreatitis, an inflammation of the pancreas that hurts its ability to produce the enzymes to digest food and hormones such as insulin. She's tried medication and surgeries to little avail. Now she's hoping a rare treatment at the Medical University of South Carolina in Charleston might be the end to her troubles.
"I want a life back," said Graziano, 30. "I'll do whatever it takes to get over this."
Graziano, a Hilton Head Island resident, is scheduled in July to receive an islet cell transplant at MUSC, which has offered the procedure for about two years. The technique is relatively new, first pioneered by a Minnesota hospital in the late '70s. MUSC is one of the few hospitals in the country that performs the procedure.
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The surgery removes the pancreas. Once out, the cells that produce insulin, called islet cells, are isolated and returned to the body in the liver. The procedure allows the body to still produce insulin, avoiding the brittle diabetes that can result from not having a pancreas. Patients may still develop a form of diabetes; as many as 40 percent take some level of insulin after the surgery, said Dr. David Adams, the head of MUSC's general and gastrointestinal surgery.
The potential for diabetes is an acceptable trade-off for most patients who are looking to end their chronic pancreatitis. Adams said he had a patient who went from having to take medication intravenously for months to combat the pain to living a relatively normal life after the surgery.
"When it works, it's very, very effective," he said.
For Graziano, the pain started in 2004, when she was living in her native Long Island, N.Y. At first she thought she had an ulcer. She bounced from doctor to doctor. One doctor said it was just the flu. Others were skeptical of her story, brushing her off as a junkie looking for a painkiller fix.
She moved to Hilton Head Island in 2008 and the problem gradually worsened. Finally, she was diagnosed by Adams at MUSC. Adams said doctors not specializing in gastrointestinal disease can miss a serious problem. They need to specifically look for chronic pancreatitis because some forms of the condition are difficult to spot in routine tests.
Graziano has had surgeries that rerouted her large intestine, taken a slew of pills and gone on special diets that caused her to become frail. She's taken so much pain medication, she said, that she's highly tolerant. The pain is getting worse. The flair-ups come unexpectedly. She's worked as a massage therapist at resorts when she first arrived on the island, but the pain causes enough disruptions that she can't hold a job.
She lives on disability payments, and is relying on Medicare to pay for a portion of the surgery. She's relied on help from friends and family for additional money, but is looking to raise about $25,000 for the islet cell transplant surgery. She plans to have the procedure in July.
Meanwhile, her life is controlled by pain. She said she's lucky if she gets a few hours a day when she feels good enough to leave her apartment. Her friend and neighbor, Jason Parrish, is close if she is overcome with pain. Otherwise, maintaining friendships has been difficult. She's had to back out of plans so many times that the calls have stopped coming. Her two German shepherd mixes -- Nama and Shiva -- keep her company. She considered moving back to Long Island to be closer to family, but doesn't want to switch doctors.
"You just learn to adjust to the pain," she said.
Graziano felt well enough to attend a friend's wedding in Kentucky last month. She was somewhat surprised; the pain didn't ruin the warm spring day. It was a vestige of a normal life. She's got another wedding to attend next year. She's hoping the pain won't even be around then.