This story was originally published in June 2016, before Lisa Brown passed away.
Lisa Brown is well aware of what she looks like, thank you.
"It always amazes me what people say to me," says the 5'10" former model. "For years, people will come up and give me advice on being anorexic or are really rude and say things like 'skinny bitch.'" But Lisa, whose weight has plummeted from a healthy 140 lbs. to less than 90 lbs. in the last five years, doesn't have anorexia or bulimia.
"I have a very serious gastro-vascular disorder and I literally can't eat—that's the Cliff's Notes version," she says, admitting she's stopped trying to defend herself to strangers. Lisa, 32, was diagnosed with superior mesenteric artery syndrome (opens in new tab) (SMAS), a digestive condition that occurs when part of the small intestine is pinched between two arteries, completely blocking digestion—as well as gastroparesis (opens in new tab), meaning her stomach doesn't empty properly so she can't absorb nutrients. In short, Lisa is slowly starving to death.
A Healthy, Happy Life
Raised in the Milwaukee suburb of Brookfield where she still lives, Lisa says she never worried about her weight. She briefly modeled in Italy in high school and eventually graduated from Waukesha County Technical College with honors. While working as a substance abuse counselor, she got her car oil changed on a lunch break in February 2006—and met her now-husband Patrick, who was a mechanic at the time.
"His sense of humor and mine are very similar, which is the first thing that attracted me to him," she recalls. "And he's a very honest and forthright person, which was very important to me as someone in counseling." Lisa asked him to lunch on Saint Patrick's Day. They married in May 2010 and honeymooned in Playa del Carmen, Mexico: "We haven't been apart ever since."
In early 2012, Lisa started noticing changes: At first, she felt full quickly when eating, then once-tight clothes became loose. Soon, her custom pink sapphire wedding ring started to slip off. "I was always on the thinner side," she says, "but I ate quite a bit, so it didn't make sense."
Though she didn't own a scale, she knew her health was getting worse as the months passed. She couldn't keep food down and vomited after every meal. "It was like my ability to eat quantities had shrunk and shrunk, until eventually I couldn't eat anything." Abdominal pain and debilitating nausea became so intense that she would curl up on the floor in the fetal position: "I would be in tears from the pain and so angry because it didn't make any sense."
Though she continued working as a counselor, her social life with Patrick, 31, became nonexistent. "Going out to eat was dicey because in public, I would spit up just like a baby. It's not like I had time to run to the bathroom. Our life completely did a 180." And her medical issues quickly became the focus of their relationship—and have stayed that way for two years. "We don't really get to do anything anymore," says Patrick. "Everything that we do is based around her being sick."
Her doctor put her on acid reflux medication Prevacid. "I thought it seemed a little unusual that acid reflux would be to this degree," Lisa admits. But that December, she got on the scale at her mother's house: "I just couldn't believe that I was 112 pounds," she says. "I hadn't weighed that little since I was a teenager. I knew this wasn't normal."
For much of the following year, she was "passed back and forth" by specialists for various gastrointestinal tests: gastric imaging, endoscopy, and colonoscopy. Many GI conditions' symptoms are similar, explains Lisa, so she wasted months also testing her thyroid or checking whether dropping dairy or gluten would make a difference. Nothing did. "Time kept passing and passing," she recalls. "It was just insane—and I ended up with no answers."
A Brief Respite
Finally, Lisa went to nearby Froedtert Hospital & Medical College in December 2013. The gastroenterologist took one look at her prior CT scans and angiograms to give her a diagnosis. (There have only been 400 documented cases of SMAS to date.) "She could see the pinched area of my intestine very clearly in the scan and the actual doctors reports. There were also notations by other doctors' about the pinch, suggesting further investigation for superior mesenteric artery syndrome, says Lisa. "But nobody ever told me, which is frustrating. Now, I tell people to be their own advocate and check your own medical records."
But for the first time, Lisa had good news: A corrective surgery could relieve symptoms by rerouting food through a new passageway and bypassing the blocked intestine. But first, she had to gain weight—and strength. "I was in such bad shape that the doctor didn't think I would make it through surgery." She went on a nasal feeding tube for three weeks and had the procedure in February 2012.
For a few months, Lisa was able to keep down the foods she gradually reintroduced into her diet, even though she still had pain. "It was my little honeymoon period. I still couldn't eat large portions, but I didn't have any food restrictions." She was able to go on their annual trip to Playa del Carmen. "My doctor said it seemed to be a total fix."
But in May, the vomiting returned. "It was pretty devastating and progressively became worse," she says. A barrage of tests showed no additional explanations. To keep her malnutrition at bay, a nasal feeding tube was put in, followed by one surgically inserted into her stomach, and then finally a vascular feeding system. But still, she kept wasting away.
The New Normal
For 20 hours a day, Lisa is hooked up to the vascular feeding system through a port in her chest. After a restless night's sleep, her nutrient infusion ends at 8 a.m. and she has "four hours of freedom" before hooking up again at noon. "No matter how sick I'm feeling or how much pain I'm in, I get out of the house because I'm trapped here the rest of the time." Lisa will run errands or go to the craft store. When Patrick, an engineer who travels frequently for work, is home, the couple go to their favorite coffee shop.
A home, she's back on the pump—and on the phone for hours. "I have to deal with the insurance company and doctors offices: disputing bills and claims, making appointments, and getting things approved," she says. "It's exhausting." She finds solace in creating crafts and art projects, especially jewelry and intricate cards to send to people she knows through an SMAS Facebook support group.
Her mother, Patricia Neuhauser, lives nearby, so when Patrick is on the road, she comes over to help her only child. "She helps with all the things I can't do anymore and will spend hours on the computer researching and looking for physicians," says Lisa. "She puts everything she has into it. I'm blessed to have her and I'll never ever take her for granted."
"I was being shrugged off by the doctors at this point," Lisa recalls of this winter. "I just kept on the TPN [total parenteral nutrition, her vascular feeding tube] and losing weight and losing weight." Inspired by her friends on a Facebook support group, Lisa made an 11-minute video of her story and posted it on YouTube (opens in new tab) in January 2015. "The world needs to see and understand," she says. "I thought, What does it matter if people see me in this light? They already see me and make a judgment. I might as well put it to good use."
Lisa heard about the Cleveland Clinic in Ohio, a center for experts on SMAS, through her support group. In March, she booked the first available appointment for July 15. "I thought, I'm not going to live until then." Desperate, her mother, Patricia Neuhauser, sent the video and a local news story on her to specialists at the clinic, which got their attention. They got her an earlier appointment, and a local business flew Lisa, who was too weak to take a commercial flight or drive, on their company jet for free.
At the hospital, Lisa met with Dr. Matthew Kroh, director of surgical endoscopy. Their goal was to combat her malnutrition and find out what else was wrong besides her SMAS. "I was so ill when I arrived that it took two and a half weeks to stabilize me before they even felt comfortable doing any testing," she explains. After she gained 6 pounds (bringing her weight to 94 pounds), doctors performed a test with a SmartPill, which was placed endoscopically in her stomach and traveled her intestinal tract, communicating hormone and vitamin levels, acidity, and digestion time. In early July, she got her second diagnosis: gastroparesis.
While research on the causes of gastroparesis is limited, Lisa says it can be triggered by abdominal surgery. "The nerve endings that allow your stomach to pump to process the food and push it down your intestines are somehow damaged," she explains. "They're paralyzed so your stomach can't drain."
Putting Their Relationship to the Test
The couple admits that the last several years haven't been easy on their marriage. "It's not an equal partnership anymore," Lisa says. "I used to be the caretaker: I cleaned, made all the meals, did the planning and shopping. Now, I need everything done for me."
But Patrick, who's a problem-solver by nature, struggles with the inability to fix this. "It's unbelievably frustrating, disheartening for him to accept that we don't have a solution right now—as he watches his wife die," says Lisa. "He's so emotionally supportive of me, but it's torn him apart. I feel extremely guilty that more than half of our marriage has been illness."
While that's challenging, Patrick's concern is naturally for his wife."What is it like to watch this? It's the hardest thing I've ever had to go through," Patrick says. Being gone so often doesn't help: "It's constantly on your mind that your wife is dying but you need to pay the bills. I worry daily, leaving and not knowing what could happen."
He admires Lisa's strength and willpower—and tells her she's beautiful all the time. "She absolutely is beautiful, on the outside and inside," says Patrick. "I probably would have given up a long time ago. She just wants to survive and spread awareness of this horrible illness so that maybe somebody else doesn't have to go through it."
Though the pair has good insurance through Patrick's job, the bills keep adding up—especially because much of Lisa's care is specialized and often not covered. Her family has created a GoFundMe page to help with the costs. "After insurance, I think our expenses came out to $11,000 for her last 3-week stay in Cleveland," Patrick says. "Who knows how long she will be there this time … But money's not worth anything if you don't have anyone to share it with."
Hope for the Future
On July 15, she had a surgery at the Cleveland Clinic to put in a rejejunostomy feeding tube, which will give her more freedom to move around. Patrick says the surgery was successful. Because he was on a job site in Denver, her mother went with her. "Hopefully, Lisa can get some of her life back and have more freedom so she's not hooked up 24 hours a day to the pump. Then they will do some more testing."
Adds Lisa, "It's not a permanent fix, but this will hopefully get my stomach and my digestive tract working again—and finally keep me strong and stable."
Update, January 25, 2017: Tragically, after a five-year struggle (opens in new tab) with superior mesenteric artery syndrome and gastroparesis, Lisa Brown died on January 21, 2017 (opens in new tab). She was 34. " She was an amazing person," her husband Patrick tells GoodHousekeeping.com. "As much as she is missed, I am at ease knowing she isn't suffering anymore."
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