A woman in the US who survived a five year battle with flesh-eating bacteria, undergoing dozens of operations, including an unusual bowel transplant, has given an interview about her ordeal.

34-year old nurse and mother Sandy Wilson told the Associated Press (AP) that at one point she felt like she “was rotting from the inside out”. She described coming round from the anasthetic, looking under the sheet at her belly and seeing that all the skin was gone and all she could see were her internal organs.

Wilson fell victim to necrotizing fasciitis, an infection caused by a common bacterium called Group A Streptococcus (GAS) which people often carry in their throat or on the skin, but only very few who come in contact with it develop serious symptoms.

Most GAS infections are mild, for example “strep throat” or impetigo, but occasionally the bacterium causes severe and even life-threatening diseases such as necrotizing fasciitis and streptococcal toxic shock syndrome (not the same as the sydrome linked with tampon use), says the US Centers for Disease Control and Prevention (CDC).

Necrotizing fasciitis occurs when the GAS bacterium enters parts of the body normally devoid of bacteria such as the blood, muscle and lungs.

The disease progresses vary fast and destroys muscle, fat and skin. About 1 in 4 patients who get it die, and many of those who survive do so with disfigurements. However, there is an alarming trend in that drug-resistant staph superbugs like MRSA are also developing the ability to make necrotizing toxins.

Although it can strike healthy people, people with chronic illnesses like diabetes, cancer, and chronic heart or lung disease, and those on medications such as steroids are at higher risk, as are people with skin lesions (eg from cuts, surgery or chicken pox), the elderly, and people with a history of alcohol abuse and injection drug use, says the CDC.

According to the National Necrotizing Fasciitis Foundation, the early symptoms usually develop within 24 hours and are characterized by:

  1. A recent minor trauma or skin opening, although the wound may not appear infected.
  2. Pain in the general area, but not necessarily the exact spot, of injury.
  3. The pain is usually worse than you would expect for the type of injury and may feel at first like you have pulled a muscle but then becomes stronger.
  4. Flu-like symptoms develop, eg diarrhea, nausea, fever, confusion, dizziness, weakness, and generally feeling bad.
  5. Intense thirst.

But the biggest symptom is having all these symptoms at the same time and feeling worse than you have ever felt before in your life without understanding why, says the NNFF.

Within 3 or 4 days, the symptoms become advanced such that the area affected begins to swell and may show a purplish rash, and have large dark marks that turn into blisters filled with blackish fluid. The wound itself may appear necrotic and look bluish, white or dark, flaky and mottled.

And within 4 or 5 days, the person’s blood pressure drops severely as their body goes into toxic shock from the toxins the bacteria have generated. They often become unconscious as their body gets too weak to fight the infection.

No one knows how Wilson got necrotizing fasciitis. The symptoms started after she gave birth to her son, Christopher, in April 2005. She was delivered by cesarean section and developed a clotting problem for which she received blood components derived from hundreds of donors.

A few weeks later she went home but within two days she was in emergency care. Fluid had gathered around her C-section and her blood pressure was very low. She was rushed into surgery but when they realized what she had, they closed her up quickly, said the AP report.

Over the following five years her life was an endless round of surgeries, spending most of the time in hospitals and rehabilitation centers, and hardly able to see her son. She also lost her marriage.

The disease eventually took her appendix, spleen and gall bladder, part of her stomach and all of her intestines.

Wilson said it was “like I was rotting from the inside out”.

She ended up at Baltimore’s Shock Trauma Center, where they specialize in life-threatening cases and have the latest up to date equipment.

The Center is part of the hospital where Wilson once worked as a pediatric emergency nurse: the University of Maryland Medical Center, so the doctors and staff knew her.

Physician-in-chief Dr Thomas Scalea said he probably operated 40 or 50 times on Wilson. Every time they operated they realized the previous one had not caught it all.

He remembers vividly how sick she was:

“The fact that she was a nurse at our place, that she had just had a baby, all of that made it very, very hard,” he told AP.

The bacterium spread to Wilson’s intestines where it developed fistulas, holes where the contents leaked out to her skin. She spent two years in the Shock Trauma Center and in rehab, trying to heal the open wounds. She was in constant pain and feeling nauseated from the pain medication, she said.

By late 2006, so much of her small intestine had to be removed that the medical team felt only one, rather risky solution remained: a small bowel transplant. She had also developed liver problems.

Dr. Cal Matsumoto from Georgetown University Medical Center evaluated Wilson for a bowel transplant and said he remembers taking off the dressing and seeing just the bowel with holes in it, like worms coming out of the abdominal wall.

“It was pretty bad,” he told AP.

Wilson eventually had the bowel transplant late in 2007, and then more operations including skin grafts to connect the new bowel to the bit of colon that remained so she would not have to wear a bag to collect waste.

The last operation, hopefully it really is the last one, was in February this year. Wilson will have to take immunosuppresants for the rest of her life, and her belly looks like a “quilt of scars”, but she is home, and making up for lost time with Christopher, who is now five.

Wilson said she wants to resume her nursing career and “help someone else who has gone through this”.

— National Necrotizing Fasciitis Foundation fact sheet.

Sources: Associated Press, CDC, NNFF.

Written by: Catharine Paddock, PhD