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Barring 76 pounds, the NJ woman’s condition is “extremely rare.” But her spirit remains unbroken. – NJ.com | Casual Expat

Amanda DeAngelis has roots in activism and raising awareness of causes stemming from the #metoo movement when she took the stage at a poetry slam and shared her experiences as a rape survivor.

Today she has a different reason. It’s just as personal, but extremely rare.

The 34-year-old’s body cannot process or even absorb food and drinks. At her Allentown apartment, where her husband Christopher takes care of her and helps her get her nutrition through an IV, she quickly loses weight – down to 76 pounds – while battling gastrointestinal distress.

In March of this year, she underwent major surgery to remove most of her stomach, small intestine, gallbladder, colon and appendix. A bowel transplant could give her some quality of life back, but her doctors say she’s a long way from that goal today.

Now she hopes to raise awareness — for herself, to find other people with similar experiences who may be able to shed more light on their plight, and for others who may be suffering similarly.

“We spent years looking for answers just as my condition was getting worse. I’ve had a lot of close decisions and complications, but I’ve made it this far,” Amanda said in an email to NJ Advance Media.

“I want to be able to love and support others in a position like mine,” she said.

Amanda’s case is what one of her doctors calls “extremely rare” — they’ve only found about 15 cases like hers worldwide — but her complicated condition has no symptoms, all of which fit neatly into a known diagnosis.

Friday, August 12, 2022 – At left, Amanda DeAngelis watches as her husband Christopher prepares an injection of the only food her body can accept, TPN, or total parenteral nutrition, due to an “extremely rare” condition that causes her is decreasing at an alarming rate.Michael Mancuso | NJ Advance Media for NJ.com

One condition she has been diagnosed with is severe gastroparesis, a partial paralysis of the stomach that causes her to vomit constantly, but the presence of specific antibodies in her blood also points to a rare autoimmune condition called stiff-person syndrome, a her doctors said.

“She came to us for intravenous feeding and was unable to eat or drink,” said Dr. Kishore R. Iyer, Director of Adult and Pediatric Colon Rehabilitation and Transplantation at Mount Sinai Medical Center in New York. “Now when we saw Amanda, it became clear that on the one hand she had all her guts in place. On the other hand, it seemed like they didn’t work at all…she vomited everything she ate and drank.”

Iyer said that after “some deliberation and agony,” it was decided the best course of action was to take out a good chunk of her intestines and part of her stomach and reduce resistance along the digestive tract in hopes of restoring function.

After that surgery, Iyer said Amanda was “a dramatically changed person. The vomiting almost subsided.”

But the improvements didn’t last more than a few weeks, and her symptoms “came back with a vengeance,” Iyer said.

Despite Amanda getting prescribed nutrition right into her veins, Iyer said, “She’s losing weight for reasons we don’t really understand.

“If we could get to the point where we can at least control her vomiting and stabilize and improve her weight, she would be a candidate for a transplant of her entire small intestine and colon so she can start eating and drinking.” ‘ he said, ‘and be relieved of IV nutrition.

“That would be the goal of an intestinal transplant. She is a long way from that today.”

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Friday, August 12, 2022 – A wedding anniversary decoration, adorned with photographs of the happy couple, hangs on a wall in Amanda and Christopher DeAngelis’ home. Michael Mancuso | NJ Advance Media for NJ.com

It was 2017, a more physically healthy time in her life, when Amanda performed her poem “After #metoo, how will we change?” on a small stage in a darkened auditorium at Princeton’s Arts Council.

As she left the stage, the silence was broken by applause and acknowledgments, and she returned to her seat. Her then-boyfriend Christopher was waiting there for support.

The couple met a few years earlier when Christopher’s mother, who worked with Amanda’s best friend, suggested the two would be a good match.

“We went on a date and saw each other every day that week,” Amanda said.

Amanda said she’s struggled with chronic illness for over a decade, or maybe her entire life, and recalled having some early symptoms as a child, her mother calling it a “sensitive stomach.”

“My mysterious stomach issues kept getting worse and more frequent,” she said, “to the point where I started getting hospitalized for what they called gastritis and IBS at the time.”

When they married in 2018, Amanda weighed around 127 pounds. Recently, her weight had dropped to around 76 pounds.

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Friday, August 12, 2022 – A 2018 wedding photo of Amanda and Christopher DeAngelis hangs on the wall of the couple’s home. (Photo by Macpherson Photography.)Michael Mancuso | NJ Advance Media for NJ.com

In his role as the primary caregiver to his wife of four, Christopher has become adept at managing her diet.

On a recent Thursday at home, much of the DeAngelis’ limited kitchen space was cluttered with the weekly shipment of boxes of intravenous nutrition known as total parenteral nutrition, or TPN. Christopher methodically unpacks the boxes and fills her fridge with them.

Putting on surgical gloves, carefully laying a paper towel on the counter and arranging the items needed, he filled a syringe with the intravenous nutrition known as TPN, which he then injected intravenously through a Hickman catheter his wife dubbed “Howie.” . ”

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Friday, August 12, 2022 – Christopher DeAngelis opens boxes of total parenteral nutrition (TPN) to put in the refrigerator. The intravenous feeding method, which bypasses the gastrointestinal tract, is the only food his wife Amanda’s body can accept due to her condition.Michael Mancuso | NJ Advance Media for NJ.com

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Friday, August 12, 2022 – Christopher DeAngelis puts bags of total parenteral nutrition (TPN) in the refrigerator.Michael Mancuso | NJ Advance Media for NJ.com

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Friday, August 12, 2022 – Christopher DeAngelis injects total parenteral nutrition (TPN) into a Hickman catheter for his wife, Amanda.Michael Mancuso | NJ Advance Media for NJ.com

Leaning back on the couch, she watched him lovingly.

“He’s my husband, my caretaker,” she said. “He helps me undress. He helps with the shower, he helps me change my ostomy bags. He sets up the TPN for me. He prepares my medication for me.

“When he’s not home, I hardly move from the couch.”

Christopher is employed by Triad RF Systems in East Brunswick and he said his work has been very accommodating to him as he takes care of Amanda both at home and on recurring trips to the hospital.

“They really worked with me,” he said.

For her surgery last March, Amanda was at Mount Sinai for a few months. “I was in New York the whole time because I had to be with Amanda,” Christopher said.

“And they said, you know, we’ll just find out … I was able to work remotely part-time and on the days I couldn’t work, I was able to claim New Jersey’s family vacation insurance.”

When asked how he’s coping with the demands of his schedule, he replies, “I wish I had a good deal on it… It’s just what you do.

“I would do anything for Amanda. I know she would do anything for me… We’ve been there from the start, so it’s a part of my life as much as it’s a part of hers.”

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Friday, August 12, 2022 – Christopher DeAngelis wears a T-shirt stating gastroparesis, just one of the diagnoses given to his wife Amanda.Michael Mancuso | NJ Advance Media for NJ.com

As her struggle continues, Amanda keeps a presence on social media with her Instagram account and an online site where people can make contributions to help with the couple’s medical bills. She usually posts, she says, “in the middle of the night when I get up alone and vomit in between.”

“I really miss the (more involved) activism work,” she said, “but it’s hard with the exhaustion and the brain fog.”

Two weeks ago Amanda was admitted to Capital Health Hopewell and then transferred to the Mt Sinai Intensive Care Unit where she is still being treated today for sepsis from a blood infection through her Hickman catheter and then a host of other complications including dangerous blood pressure and high fevers.

Your spirit remains unbroken.

“You know, when I wake up,” she said from her hospital bed, “the first thing I think of is my husband and my cats. I think of my mother and my nieces.

“Then I immediately try to think of all the people I know around me who love me and are there for me. I always try to start my day with loving gratitude.”

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Friday, September 2, 2022 – Amanda DeAngelis in her hospital room at Capital Health Hopewell in a photo taken by her husband Christopher. Michael Mancuso | NJ Advance Media for NJ.com

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Michael Mancuso can be reached at mmancuso@njadvancemedia.com

Updated: September 19, 2022 — 5:38 pm

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