From drive-thru to OR: A twisted tale of a patient's rare condition, complex surgery

When Jacob Whitt rolled through the drive-thru with friends one night in November 2022, he had no idea that the cheesy, saucy goodness he ordered would lead to a 38-day stay in the hospital.

The late-night vittles didn't sit right with Jacob, who began experiencing agonizing abdominal pain and dehydration. He went to the emergency department in his hometown of Richmond, where he was prescribed a medication called Lomotil to help quell his gastroenterological distress and help him retain fluids.

The next day was Thanksgiving, and with his symptoms abated, Jacob partook in a traditional feast with his family. However, Jacob woke up the next morning feeling sicker and more bloated than he ever had.

"It was like I had a pregnant belly, and I had to hold it because gravity was pulling my stomach and it was painful," said Jacob. "I was thinking it was just gas and that it would pass, but after a couple of hours, I felt like I was going to explode."

By the time Jacob went back to the emergency department, the swelling had gone down and he felt a little better. While his imaging scan cleared him of issues stemming from his immediate problem, it did reveal something unusual. There, in the doctor's notes of the scan results, were the words "malrotation of the small intestine—follow up with general surgeon."

"While I was waiting for the doctor to come back, I went down the WebMD rabbit hole," said Jacob. "I googled what it was and the methods to correct it. I became a GI specialist in 30 minutes."

If Jacob was frustrated by the lack of information on malrotated small intestines in adults, it's because there isn't much to be found.

"Malrotation typically presents within the first month of life, and is corrected within the first year," said J. Scott Roth, M.D., chief of the UK Division of General, Endocrine and Metabolic Surgery and chief of surgery at UK Good Samaritan Hospital. "We occasionally see patients who have malrotation later in life that is totally asymptomatic. The general thought is that if you aren't having problems by the time you're 50, 60, 70, you're unlikely to have a problem."

But it was causing problems for Jacob, who was 22 at the time. The Lomotil he'd been prescribed at the emergency department slows down the gut. This coincided with what would have otherwise been an asymptotic twist—called a volvulus. The slowed digestion from the medication coupled with the volvulus created a perfect, painful storm.

The intestines are the longest part of the digestive system, a long, winding tube that, when stretched out, would measure over 20 feet long. As fetuses develop in the womb, the intestines start out as a straight tube in the umbilical cord before moving into the abdomen at the end of the first trimester.

Malrotation occurs when the intestines fail to move to their proper place within the abdomen. Parts of the intestine settle in the wrong place, which in turn can cause them to twist and become blocked. While twists can resolve on their own, intestines can also twist so tightly that blood supply is constricted, and the bowel can die. The condition is almost always seen in newborns and is corrected surgically within the first year of life. Less than 1% of all identified cases occur in adults.

Jacob could have opted not to have the malrotation corrected—after all, it had never bothered him before. But the chance of it happening again at the wrong time and place was too great. An avid traveler and skier, he was acutely aware that the next episode could occur far from a hospital with a Level 1 trauma center like UK HealthCare. He also understood that the next episode could be far more serious; the twist could result in a ruptured intestine, which in turn would lead to sepsis. Erring on the side of caution, Jacob came to UK HealthCare where he was evaluated by Roth. He scheduled his surgery with Roth for May 16, 2023.

Thus began Jacob Whitt's "lost summer."

While an expert in all things related to adult gastrointestinal surgery, a malrotated intestine was out of Roth's wheelhouse. He enlisted the help of David A. Rodeberg, M.D., chief of the UK Division of Pediatric Surgery and medical director of Kentucky Children's Hospital's operating rooms.

"Although I've seen it a handful of times over my career, it's not something we do every day," said Roth. "Adults with malrotation is not something that anyone does for a living because it's so rare. So Dr. Rodeberg and I did the surgery as a team. It really speaks to the collaboration we have at UK HealthCare. We have the chief pediatric surgeon and the chief of adult GI surgeon doing an operation together."

Rodeberg estimates he operates on about one adult patient a year with Jacob's condition; even then it's usually identified during an unrelated procedure and Rodeberg's team is called in to provide guidance.

"The procedure for adults is the same," said Rodeberg. "The patients are just larger."

Malrotated intestines are held in place by bands of abnormal tissue that compress the duodenum, or the first section of the small intestine. That compression causes constriction and blockage, preventing the passage of any food through the rest of the digestive tract. During Jacob's surgery—called a Ladd's procedure—those bands were released, and the intestine was untwisted.

"We sort of create a new anatomy," said Roth. "Instead of the normal anatomy where the intestines are in the lower part of the abdomen, we moved them to the right and put the colon on the left."

The mesentery, a fold of the membrane lining the abdominal cavity, was flattened out to give the blood vessels that feed the intestine more room. Jacob's appendix was also removed; if Jacob were ever to experience appendicitis, it would be difficult to determine why he was having upper left quadrant pain when the appendix is typically found on the lower right side.

Two days after his surgery, Jacob was back home and ready to get better. After a few days of eating normal foods, he first experienced acid reflux that led to intense, painful bouts of vomiting.

"It was literally gut-wrenching pain," he said. "I'm tensing up my abs because fully expanding my diaphragm caused my skin to stretch against my stitches. I vomited three times, and each time it was an obscene amount. I could feel everything I had eaten that week sloshing in my stomach; it couldn't go anywhere except up and out."

Jacob returned to the hospital, where he met with Roth and his team. The initial diagnosis was post-operative paralytic ileus. After surgery, it's not uncommon for the bowels to not "wake up" right away, temporarily paralyzed because of the rearranging. The plan was to wait it out and see if the intestines woke up and resumed working on their own.

"The concern with going back in too early is if you remanipulate the intestines, you create more ileus, more adhesions and the potential for more obstruction," said Roth. "The hardest part in medicine is the waiting. The first go-round, we felt like we did a great operation, and did what was needed to be done. There's a delicate balance of deciding when to go back in and how long to wait."

In the meantime, a nasogastric (NG) tube was inserted in Jacob's stomach through his nose to pump out the fluid in his stomach. A peripherally inserted central catheter (PICC) was inserted into his arm to send fluids and nutrition to the large blood vessels near the heart. The PICC line also delivered pain medication and relief to Jacob, who was going stir-crazy after weeks in the hospital.

"I apparently had hospital delirium where I don't remember that much in the moment, which I consider a blessing," he said.

The pain and discomfort from the NG, the stress of his prolonged condition and the uncertainty of what would happen next took its toll. He lost 35 pounds in just a few weeks. Jacob relied heavily on his family for comfort as well as his new friends—Roth and the care team at UK HealthCare's Good Samaritan Hospital.

"There were some days I couldn't joke around," he said. "There were many nights where I thought I was going to die. Dr. Roth was not only my surgeon; he became a trusted friend for me and my family. His team really went above and beyond. My nurse, Risper, was a literal angel and was there with me almost every night. She and the others became really close with my family. I'm incredibly thankful for them."

On June 13, Roth and his team decided the waiting period was over. A month after his first surgery, Jacob went under again to remove the dense adhesions that had formed around his duodenum. Roth and his team initially planned to do the procedure laparoscopically—inserting a camera and surgical tools through a small incision—but a complication from the first surgery called for a change of plans.

"They said it was like someone poured concrete in my bowels," Jacob said. Dense scar tissue had developed over the first surgical site. After trying for several hours to get through the thick tissue, Roth and his team fully opened Jacob's abdomen— from sternum to belly button. Since the tissue was around the duodenum, a bypass was created to go from his stomach, past the adhesions and straight to the second section of the small intestines, called the jejunum. Post-surgery, Jacob again experienced paralytic ileus, but this time, it resolved in a few weeks.

Now 38 days since his admission, 48 days since his first surgery and 220 days since that fateful trip to Taco Bell, Jacob was out of the woods. Or so he thought.

Itching to get out of the hospital in time to celebrate the 4th of July, Jacob was encouraged by clear scans and healthy vitals. The night before he was to be discharged, members of his care team stayed past the ends of their shifts to see him off. Jacob downed a chocolate shake while counting the seconds until he could eat a real meal.

Moments later, the shake reemerged.

"At this point, I'm thinking, 'Am I going to die? Are they going to have to open me up again?'" he said.

To reduce his dependency on pain medication and prepare him for discharge, IV fluids had been discontinued, and Jacob soon became dehydrated from the bouts of vomiting. More imaging scans showed no obstructions and no adhesive bands compressing his small intestines.

There was a new twist to Jacob's story, and this time, it wasn't in his intestines. A collection of infected fluid called an abscess had formed behind his bladder. Abscesses are not uncommon after abdominal surgery and can be treated surgically or with antibiotics. The antibiotic route would have meant an additional 14 days in the hospital, and Jacob was more than ready to go home. He was presented with a third option, to have the abscess drained via interventional radiology, a minimally invasive procedure in which surgical tools are guided by imaging through a small incision.

After the procedure, Jacob was finally discharged and cleared to go home. He dutifully took his antibiotics to help clear up what remained of the abscess. He fondly recalled his first real meal—chicken tenders—but still harbored a fear of eating. What if he vomited again? What if there was another obstruction? But in the weeks that followed, Jacob discovered he was having the opposite problem—10 to 14 bowel movements a day.

He had been told by Roth to expect more frequent movements as his body sorted itself out, but this seemed excessive. Jacob felt he couldn't go anywhere or do anything without having an issue. His girlfriend, Ashton Jernigan, is in nursing school; she suspected that weeks of taking necessary antibiotics resulted in an infection of Clostridioides difficile known as C-diff, a bacterium that causes inflammation of the colon. The antibiotics Jacob was taking to fight of the bad germs were also killing off the good bacteria in his gut; another call to Roth and a series of tests confirmed what Jacob's girlfriend suspected.

"Dr. Roth called me and said, 'You just throw a wrench in everything,'" Jacob said. "And honestly, at that point, it was pretty humorous. You just have to laugh."

A few rounds of probiotics corrected the bacterium imbalance in Jacob's gut. With his physical ordeal out of the way, Jacob found he had an equally vexing mental one: He was terrified to eat.

"I hadn't had food in basically two months, aside from a bite or two of chicken tenders," he said. "Everything I had eaten I threw up. I was so scared of eating."

Though long since removed, he could still feel the NG tube in his nose. The few things he tried, such as his beloved coffee, tasted awful. But he faced his fears and ordered what he had been craving for months: cheese curds and an M&M shake.

Not only were they the best cheese curds he had ever eaten, but they also stayed down. With his fear of food vanquished, Jacob felt well and truly on the road to recovery.

Months later, Jacob is back to eating—and digesting—his favorite foods. After getting the all-clear from Roth, he went back to the gym and was pleasantly surprised that while he lost a massive amount of weight, he was able get quickly get back to where he left off with his strength training. He channels his passion for crafting into woodworking, making custom pieces in a shared space in Richmond. After being hospital-bound for so long, he found solace in long drives through the country with his girlfriend. All vestiges of his "lost summer" are gone.

Jacob relied on his faith for the strength to get through his long ordeal, but he realized his faith didn't just make him stronger. He saw with new eyes the blessings in his life—a whole community lifting him up when could not lift himself. Visitors from his church family at Immanuel Baptist stopped in almost every day, bringing the prayers, faith and hope from not just his fellow congregants, but from churches outside Kentucky.

"I believe one part that has been really hard for me to learn from this is God is truly always with us through everything," he said. "Whenever it seemed like things were just continually going downward, he was actually showing me those that He has placed in my life—my family, amazing girlfriend, friends, Dr. Roth and the nurses."

Provided by University of Kentucky