Even the slightest movement is cause for concern.
Jessica Jones can feel the tightness in her abdomen. She knows scar tissue has choked her internal organs like a vine.
The 23-year-old never knows when suddenly moving or twisting the wrong way might tear her insides apart. It’s happened before.
A lifetime of abdominal surgeries and complications have left Jones with adhesion related disorder. The condition forces her body to produce too much scar tissue.
She lives each day in pain, sometimes dull, sometimes excruciating. But the potential of a new procedure to solve the problem has given her hope, as soon as she can raise $10,000.
“My doctor can give me the quality of life I deserve, not just for myself and my family,” Jones said. “$10,000 is worth it for a pain-free life.”
Her first medical complication came when she was 8 weeks old. The tiny baby wasn’t acting right — she was fussy, wouldn’t eat and wasn’t defecating, said her mother, Patti Holt.
Doctors told Holt she was just being a paranoid new mother. When she took her daughter to the emergency room, she was shocked by the diagnosis.
“Their response was, she had to have surgery that moment, or she’d be dead by tomorrow,” Holt said.
Jones was diagnosed with Hirschprungs disease. Her colon, or small intestine, had not formed properly.
Surgeons implanted a colostomy bag and began removing more than 10 feet of diseased intestine. She was left with a small intestine about the length of a pinky finger.
For more than a year, Jones endured a series of surgeries at Riley Hospital for Children at Indiana University Health to connect her intestinal tract and make sure her body can get rid of waste. She needed a blood transfusion after bleeding internally from all of the operations.
Scar tissue that formed as her body healed blocked off the digestive tract, leading to more surgeries.
“She was in Riley more than she was out,” Holt said.
When she was nearly 4, Jones was finally healthy enough to leave Riley Hospital. To celebrate, her family, her grandparents and a great-grandmother drove to Florida on vacation.
But at a time when life seemed to be getting back to normal, tragedy blindsided them. A drunken driver struck their car head-on as they drove back from Florida.
A fractured skull, broken femur and cuts from flying glass kept her in a hospital for 31 days.
Even after being released, Jones suffered from hernias and bowel obstructions, requiring more surgeries. As a 15-year-old, doctors found a non-cancerous cyst on her right ovary, requiring an operation to remove the mass.
Despite all she had endured, Jones had her first child, Jamie, when she was 19. She married her husband, Jessie, and settled in Morgantown.
The couple considered a blessing to have one baby at all. Doctors told her that the myriad surgeries likely would leave her unable to have another child. But in 2012, she found herself pregnant with Jaxson.
Jones went into labor after just 32 weeks. She required an emergency caesarian section because Jaxson was turned around in her uterus.
The doctor who completed the surgery later described to Jones what he found.
“He’d never seen anything like it. My anatomy was all screwed up. The scar tissue was so bad that he couldn’t get in my uterus,” Jones said.
Jaxson wasn’t breathing when surgeons removed him from his mothers’ womb. He was resuscitated and rushed to neonatal intensive care.
At the same time, Jones had been injured in the fight to get her son out of her body. Two ropes of scar tissue wrapped around her bladder squeezed and tore the organ in two.
A nine-hour surgery was required to keep her alive.
“When the doctor came out, I rushed up and wanted to thank the man who had saved my daughter’s life,” Holt said. “He said, ‘Thanks needs to be given somewhere else. There was a higher power and angels in that room. In any other circumstances, she and Jaxson wouldn’t have made it.”
Jones survived and has recovered somewhat. But she has reached the point where her adhesions will likely end her life unless the scar tissue is cleaned out.
Doctors have told her using conventional treatment, it would take surgeons days to clean out and remove all of the scar tissue that is causing her problems.
Even if that were a realistic option, the current methods would create more scar tissue. Her adhesions would come back as bad, if not worse, than before.
“Everything is being torn and twisted and strangled. Doctors have told us she’s basically a ticking time bomb,” Holt said. “Her bladder is being strangled, and her colon is being strangled.”
But for the first time in years, Jones has hope. She has found a doctor who has developed a revolutionary method that would remove the adhesions without bringing them back.
Dr. Constantine Frantzides, with the Chicago Institute of Minimally Invasive Surgery, would create a tiny incision under the ribs. Layer by layer, he could take the scar tissue out.
“He’s the only doctor we’ve known that knows all of the diseases she’s had from birth and takes care of everything,” Holt said.
Jones’ insurance will pay for the procedure, but since Frantzides is an out-of-network provider, she needs to pay $10,000 herself. As soon as she has that money, Frantzides will perform the surgery in Chicago.
To help, friends and family hosted a craft fair at the Gathering Place in Greenwood in January. Jewelry and bracelet sales also have raised funds. A bank account has been set up at Heartland Community Bank.
Jones’ co-workers at Franciscan St. Francis Health, where she’s a physician office navigator, also created a fund to help.
She is confident they’ll raise the money needed to allow her to have this surgery.
But at the same time, she hopes to stand up for other patients with adhesions, to form a support network for those who have been suffering silently in pain.
“I would like to have that quality of life. But a big thing is awareness,” she said. “I’ve has so many people reach out since we started talking about this, so it’s been cool.”