Adrian Northrup

Before senior Ben Kojis reached the age of two years old, he had gone through five surgeries and spent a year and a half in and out of hospitals.

Because he was at such a young age, the only memory Kojis has of the ordeal is a foot-long scar reaching down his stomach that serves as a constant reminder.

“I was very young,” he said, “just a couple months old when it all happened.”

Life was beyond hard for Kojis, a Green Bay native, at that age and for his parents as well, his mother Martie Kojis said.
“It was completely life-consuming,” she said about caring for her son in the hospital.

He had been thought to have everything from pyloric stenosis, a condition where food is unable to empty from the stomach into the small intestine, to cystic fibrosis, a life-threatening disease.

Finally, Kojis was diagnosed with Hirschsprung’s disease, a disorder caused by the absence of nerve cells, called ganglian cells, that are necessary for bowel contents to move.

Everyone thought Kojis was finally on his way to living a normal life.

The journey there, however, wasn’t so simple.

The beginning
Ben Kojis was born on June 18, 1985. By July 6 of that year, Kojis’s parents took him to the doctor after they saw that nothing they fed him was staying down.

“He was throwing up all the time,” Martie Kojis said. “We always sat on the same couch when we fed him because it was always trashed.”

The doctor at that time diagnosed Kojis with pyloric stenosis, which was not an uncommon condition, his mother said.

“We were assured that (he would) be home in two to three days, not vomiting and growing steadily,” she said.

However, he was forced to stay in the hospital for a week when the vomiting continued.

“At first (the doctors) thought it was something little, but it was a lot bigger than they thought,” he said.

On Sept. 13, while his mother was feeding him, she noticed his hands and feet were swollen.

“They took me to the hospital and said it was because I was malnourished,” he said.

The doctors thought Kojis could have cystic fibrosis because of the lack of nutrition.

“I didn’t get to 20 pounds until I was like, a year and nine months,” Kojis said. “You could tell I was malnourished because I was constantly throwing up and I wasn’t putting on weight at all.”

After a few tests, the doctors ruled out cystic fibrosis but still couldn’t figure out what was causing Kojis to have troubles holding down food.

After three weeks in the hospital, Kojis was taken by ambulance to University Hospital in Madison.

In Madison, Kojis was diagnosed with Hirschsprung’s disease by Dr. Stuart Adair.

“Basically, what it is, is that I lack the cells in my large intestine that form peristalsis, which is the involuntary muscle movement of food through the digestive system,” Kojis said. “And then I had gastro-esophageal reflux, which was why I would throw up and couldn’t keep any food down.”

On Oct. 18, Kojis went through a colostomy, an incision into the large intestine to create an artificial opening to the exterior of the abdomen. The colostomy basically served as a substitute to eliminate waste products until Kojis grew more and was able to go through the surgery needed for Hirschsprung’s disease.

Kojis’ doctor, Adair, said Hirschsprung’s disease is not common and in Kojis’ case was particularly unusual.

“I’ve practiced for 30 years and probably only saw about a half a dozen cases (of Hirschsprung’s disease),” Adair said. “Typical cases affect just a small section of the colon; the problem with Ben’s case was that it was very unusual and affected his entire colon.”

For Kojis’ rare case, doctors would have to remove his entire colon.

Something’s not right
After Kojis’ second surgery, the colostomy, his parents were told he would begin to grow and the vomiting would cease.

Then, after Kojis would reach 20 pounds, he would be able to have the procedure reversed and have his colon and rectum reconnected.

However, around Christmas of that year, the vomiting and weight loss began again.

Adair said nutrition was needed in order for Kojis to regain a healthy status.

In April of 1986, Kojis went through a third surgery to have a Hickman catheter put in. The Hickman catheter would allow Kojis to receive nourishment as well as medication to help control his weight.

“When he couldn’t eat and gain weight, we could give him extra nutrition intravenously,” Adair said.

This period of time was the hardest, Martie Kojis said.

Ben Kojis would have to be hooked up to a “feeding machine” every night to receive this extra nutrition.

“I would wake up, pick him up from the hospital, unhook him from the feeding machine, go to work, leave him with a baby sitter, get off work, head back to the hospital, his father would meet us there when he was done with work and we would have dinner together, then we would go home and wake up the next morning and do it all over again,” Martie Kojis said. “Our whole lives revolved around that.”

That year, he celebrated his first birthday in a hospital room, Martie Kojis said.

“He was so skinny,” she said. “He was a teeny, tiny baby and they couldn’t even get IVs in his arms, so they would put it in his head. People would always walk by and stop and look at him.”

Finally “fixed”
In September of 1986, Kojis’ parents decided to switch him to the Children’s Hospital in Milwaukee.

Dealing with the distance of the hospitals from their home in Green Bay was very difficult, Martie Kojis said.

“He was in Milwaukee part of the time and in Madison part of the time, so I would have to take off work and his father would come be with us on the weekends,” she said. “Thankfully we had friends in both cities so we always had a place to stay.”

On Sept. 18, a surgery was done to find out what was wrong with the first colostomy and why it had been taking so long for Ben Kojis to gain weight.

“They figured out that in Madison, they didn’t take out enough of the large intestine,” he said.

Kojis still had the diseased colon, or large intestine, inside him and still had Hirschsprung’s disease.

The doctors also discovered Kojis had gastro-esophageal reflux, which caused him to not retain any food.

A Nissan fundoplication was done to make the valve leading into his stomach only go one way.

“Pretty much they made it so I can never throw up, ever,” Kojis said. “Food can come in but it can’t go out.”

He could finally keep food down and had the desire to eat again, his mother said.

“I wouldn’t eat a lot at all, which was exactly what I needed to do,” Kojis said. “When I had the reflux, I had all that acid in my esophagus and even with baby food, it would hurt a lot.”

Finally, the fifth and last surgery took place on Dec. 8, 1986 to connect his ileum, the lowest part of his small intestine, to his rectum.

After that, Kojis said he only had to visit the doctor a few times when he was five or six years old to make sure everything was working properly.

During this time, Martie Kojis said she would tell him stories about what had happened to him as a baby.

“He pretty much just always knew,” she said.
Ben Kojis said today, he is thankful that he was young enough not to have remembered any of it.

“I think it would be a lot worse if I did (remember),” he said. “It would have been really difficult.”

Today, Kojis stands at 5 feet 11 inches and weighs 140 pounds. He said aside from it still being difficult for him to gain a lot of weight and a more frequent use of the bathroom, his life is completely normal.

“I’ll tell girls I can’t gain weight and they’re like, ‘Oh that’s awesome,’ ” he said. “I’d like to have a little more bulk to me, but oh well.”

Kojis said when he was younger he was more embarrassed of his scars, but now it’s just a part of who he is.

“When I was younger, I was really self-conscious of my scars,” he said. “But now, it’s something cool.”

Martie Kojis said looking back on the entire ordeal she can give a big sigh of relief that it all ended up OK.

“I just think about how hard it was and have thanks that it all worked out,” she said. “Yeah it was terrible, but we still have our kid.”