In June 2000, when she was 23 years old, Brandee Bushen's appendix ruptured. The rupture led to peritonitis – severe inflammation of the lining of the belly area – which caused so much damage to her intestines that she had to have a piece removed in a procedure called a bowel resection.
In the years that followed, Bushen developed chronic kidney stones. Multiple surgeries to remove the stones damaged her right ureter – one of two narrow tubes that carry urine from the kidneys to the bladder. In 2013, surgeons removed another piece of her intestine to reconstruct the ureter.
The two bowel resections left Bushen with too little intestine to absorb all the calories and nutrients needed to sustain her. When the intestine is too short, food and fluids move through it too quickly, which doesn't allow enough time for the intestinal tissue to absorb nutrients and hydration. This can lead to malnutrition, dehydration, and frequent, severe diarrhea. This rare condition, called short bowel syndrome (SBS) or short gut, changed Bushen's life forever.
Early Struggles
About eight years after Bushen's first bowel resection, her marriage broke up. She continued to adjust to life with a chronic condition while also adjusting to living on her own. "My chronic illness definitely had a hand in my divorce," she says. At that same time, she faced repeated bouts with kidney stones that led to the second bowel resection.
For several years after that second major surgery, Bushen's body struggled to work with significantly less small intestine and get the calories and nutrients it needed from her food intake.
"I was constantly throwing up," she recalls. "I lived in and out of the hospital. My nutrition would go up and down. They were forcing protein drinks into me. I was on that merry-go-round until I got down to 79 pounds and was basically dying."
It was 2019 when Bushen had lost so much weight that her doctors recommended total parenteral nutrition (TPN), which gives a person all the nutrients and calories they need through an IV, bypassing the digestive system.
"From 2013 until I got on TPN in 2019, life was really rough," she says.
Life on TPN
The need for TPN varies from person to person with SBS. Some people may only need it a few days a week to supplement their regular food intake, while others, like Bushen, may need the IV nutrition almost around the clock.
Bushen is on IV nutrition for 16 hours a day. She has a central line in her chest – a port she connects to the IV line. The line runs from the port to a small machine that dispenses the fluids, which she carries around in a backpack. Bushen wears the backpack throughout her daily routine – on errands, to the grocery store, to doctor's appointments.
Most people on TPN run the IV fluids overnight while they're sleeping, but Bushen chose not to do it that way.
"Nighttime is my time. My illness has taken so much from me that I wanted some control, and running it during the day has helped," she says. "I was either not going to do it at all, or I was going to make it fit into my life."
She stresses the importance of making TPN work for her, rather than changing her life to fit around the TPN. "That would be too depressing."
Coming to Terms With SBS
Bushen didn't let herself be depressed for very long about her diagnosis and how it permanently changed her life.
"This is depressing, but being depressed was just making everything harder," she says.
Bushen found a photo of herself that was taken before her appendix ruptured, when she was at her happiest and healthiest. She put it in a shoebox and buried it in her backyard. She called it a living funeral for herself.
"I told myself that Brandee was gone," she says. "That I'll never get off TPN. I'll never eat normally again. I grieved that the me I wanted to be was gone, and I dealt with what I had left, learned to meet myself where I am, and it isn't so bad."
Now, after six years on TPN, Bushen gives herself one day every week to be angry, sad, or depressed. "I throw on music that makes me cry and get myself into my feelings and take one day to get really upset."
SBS and Daily Living
Now 48 years old, Bushen is on permanent medical disability. Aside from occasional errands and routine doctors' appointments in her hometown of Pendleton, Indiana, she confesses, she doesn't get out much. Two of her three adult children, who live nearby, come see her often and help in whatever way they can.
"This has encompassed my life quite a bit more than I would maybe admit," she says. This is due in part to the fact that she has to go to the bathroom about 25 times a day, she explains.
Anti-diarrheals that slow the movement of waste through the gut would reduce trips to the bathroom, but those remedies cause her GI symptoms to swing too far in the other direction. They flare up her gastroparesis, a condition in which the stomach muscles become weakened or paralyzed and don't move at all. This causes bloating, pain, nausea, vomiting, heartburn, and constipation. So Bushen avoids anti-diarrheals and contends with the two dozen trips to the toilet every day.
Once a week, a nurse comes to change the dressing on Bushen's central line and take labs. Bushen's bloodwork shows her levels of essential nutrients and lets the nurse know if the TPN formulation needs to be adjusted.
Though Bushen doesn't need to eat for sustenance, nor can her body process regular meals, she does eat very little for the simple pleasure of it.
"Salt & Vinegar Baked Lay's are basically what I live off of," she says. "It's pleasure-eating."
But besides enjoying the taste of her favorite potato chips, she explains, she needs to eat from time to time to keep her gut moving as it should. If the intestine is left without anything to do, the bacteria that live there and help break down food could seep out of the gut and into the bloodstream, which could cause infections and other serious complications.
Many people with SBS address the need to move food through the gut by receiving a slow trickle of nutrition through a nasogastric feeding tube, which goes through the nose down into the gut. "Plenty of people do it, but it's not for me," Bushen says. "I would be miserable if I had to have a feeding tube."
So she periodically eats a handful of Lay's, toast, mini-muffins, and a few other simple carbs. "Carbs are easier for our bodies to break down than vegetables, fruits, and meats. I just can't take those anymore."
It is important to speak with your doctor about the best diet and nutrition plan for you. What works for one patient may not work for you.
Mentoring Others
While her daily life may have a relatively small footprint, Bushen makes a big impact. Her frequent TikTok videos at @its_brandeeb reach more than 12,000 followers. In these informative posts, she offers practical advice for people on TPN and an intimate look at the challenges and triumphs of living with SBS.
In a recent post, Bushen shows followers the red irritated skin around her central line. She then notes that it is only a skin irritation and explains how to tell the difference between irritation and infection. Warm skin, redness that spreads beyond the site, and low blood pressure are among the red flags of infection she warns her followers about.
The videos have led to one-to-one messages and phone calls with people who are lost and afraid about their own SBS diagnosis or their child's.
"I have fully thrown myself out there for people who have this," she says. "If they're miserable and they need somebody to talk to, they can get ahold of me."
Bushen had no peer support or mentorship when she first developed SBS and went on TPN. She figured a lot out on her own. Through her TikTok videos, she says, she can offer others with SBS what she wished was available when she was learning the ropes.
She's not the only voice of SBS on social media, but not all the others are as positive as hers. When people take to social media to learn more about their diagnosis, she says, "I want them to come across my account and think, 'OK, I can live with this,' because you have to."
