A genetic disorder turned life upside down for this Texas woman—until she turned to a Pune-based doctor

Indian Express

18-05-2025

Daily life had become a huge battle for Alyssa Pettigrew, a 37-year-old accountant from Texas.
Pain coupled with embarrassment at her medical condition and a pregnancy that complicated it even more was more than what the woman had bargained for when she went in for a genetic test to rule out a family disorder.
Her worst nightmare came true as the results came positive, and thus began a long journey of trials.
Her rare genetic disorder needed the removal of her colon to prevent cancer.
'My mother and a few cousins in the family have this disorder, and realising the possibility that I could inherit it, I did a genetic test and was diagnosed with the disorder. I had more than 1,000 polyps,' she recalled.
With most of her large intestine gone, she needed a new way for waste to exit her body.
Surgeons performed a J-pouch procedure—a common reconstructive surgery for patients in her situation.
Unfortunately, Alyssa developed a recto-vaginal fistula, a distressing and serious condition where an abnormal connection forms between the rectum and vagina.
'It was incredibly painful and humiliating,' Alyssa recalled. 'I had three openings in my anus that were communicating with my vagina. I was passing stool through my vagina. It felt like an endless cycle of surgeries and disappointments,' she said.
'Familial adenomatous polyposis' is a rare genetic condition, and it is estimated to affect about one in 8,000 people.
There is a high risk of developing colorectal cancer, and while Alyssa had undergone lifesaving surgery, her condition had worsened due to several complications.
She soon turned to an international community on Facebook, Fistula Support Group, where she decided to check out alternative treatment approaches and read about a novel approach, distal laser proximal ligation surgery, that Dr Ashwin Porwal, a Pune-based colo-rectal surgeon and founder of Healing Hands Clinic, has pioneered.
She admits to never having heard about the treatment, but reading success stories from several patients across more than 20 countries in the support group gave her hope.
'It felt like my last chance at a normal life,' she said and decided to fly down to Pune.
Pregnancy complicates condition
When Alyssa arrived in India in 2023, her case had grown even more complex—she was five months pregnant.
'Administering anaesthesia posed significant risks, and any surgical intervention had to be meticulously planned to ensure the safety of both mother and baby,' Dr Porwal recalled.
'We were dealing with an extremely delicate situation — not only was her fistula highly complex, but we also had to take every precaution to ensure the pregnancy remained unaffected,' Dr Porwal said.
The team proceeded with extreme caution.
Plant-based medications replaced standard pharmaceuticals to ensure the baby's safety, and even anaesthesia was meticulously adjusted to minimise risk.
The use of laser makes debridement (removal of dead, damaged or infected tissue) more effective and takes care of fibrosis associated with the complex fistula.
'After the surgery, efficient drainage from the fistula in the first two to three weeks is the key to success for a cure,' Dr Porwal said.
This is achieved by a timely follow-up planned at five days, two weeks, four weeks and six weeks.
There is no need for daily dressing with DLPL, and the patient can resume work in three to five days,' he added.
As per the Indian Journal of Colorectal Surgery, the DLPL surgery is a safe and effective treatment for complex fistula-in-ano.
According to Dr Porwal, it is a minimally invasive sphincter-saving surgery for complex fistulas.
'Basically it addresses the intersphincteric space, which is the root cause of complex fistula,' said Dr Porwal, who has treated more than 7,000 patients
'The traditional surgery for fistula has a failure rate which can range to 30 per cent, but with DLPL, the failure rate is around 1 per cent,' Dr Porwal said.
After weeks of close monitoring in India, Alyssa was cured from a complex vaginal fistula.
She returned to Texas and later delivered a healthy baby in the US in February 2024, free from complications or anomalies.
The baby turned one year old this year and has no complications.
'Yes, my insides have healed,' Alyssa said.
After her stay in India, she decided to name her baby boy 'Devendra,' which in Sanskrit means 'chief of the Gods'.
She is now planning a bachelor's degree in accounting.
Anuradha Mascarenhas is a journalist with The Indian Express and is based in Pune. A senior editor, Anuradha writes on health, research developments in the field of science and environment and takes keen interest in covering women's issues. With a career spanning over 25 years, Anuradha has also led teams and often coordinated the edition.
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