Ten years ago, 17-year-old Nick Zecchino received a life-changing diagnosis: ulcerative colitis (UC), a form of inflammatory bowel disease (IBD). His UC sent him to the toilet 20-25 times per day, where he passed bloody stools each time. He wasn’t able to eat much because he couldn’t keep anything down. And no medications offered any relief. Two years later, surgery would give him his life back, but he had to go through a lot before he got there.
College Football Put on Pause
Just a few months after being diagnosed, he started college on a football scholarship at the University of Connecticut. He didn’t miss a game despite his symptoms. But he did lose a lot of weight. He started the season at just over 200 pounds. Three months later, he’d dropped to a mere 145 pounds. All this time, he didn’t talk about what he was going through.
“I was hiding it to try to not show weakness, but by the end of the season, it was so noticeable that I was visibly sick,” he says.
He withdrew from UConn and returned home to Cedar Grove, New Jersey. His health did not improve. Over the two years following his diagnosis, Zecchino’s doctors tried him on most, if not all, available UC medications to lower the inflammation in his large intestine and get his disease into remission.
Nothing helped. Instead, the drugs made his life worse: they did not improve his UC and left him to deal with side effects.
“I developed infections, I had allergic reactions to certain medications, I became anemic, as my body just rejected them,” he says. “The medicines were almost as bad or worse than the actual disease. Those two years were some of the roughest years of my entire life.”
Then, in 2018, his doctors talked to him for the first time about surgery.
“They said it was really the only option, the best route to go, because nothing is working,” says Zecchino, now 27. “It was one of the best decisions I’ve ever made.”
How Surgery Helps You Get Your Life Back
Nearly 1 in 3 people with UC eventually will require surgery, says David Schwartzberg, MD, a colorectal surgeon who specializes in IBD at Northwell’s Lenox Hill Hospital in New York City, New York.
“Unfortunately, despite very strong medicines, a lot of patients may still have severe symptoms,” he says, describing the same symptoms that Zecchino experienced daily.
While surgery may sound scary — it certainly did to Zecchino —the procedure typically results in the near elimination of UC. It has a long-term success rate of about 95%.
“The truth is they feel the best that they have in years,” Schwartzberg says.
What Surgery Involves
The most common procedure is called a proctocolectomy with ileal pouch-anal anastomosis (IPAA). It’s typically done in stages, with two or three surgeries spaced over several months.
Once complete, your surgeon will have removed your colon and rectum and created an internal pouch, called a J-pouch, which is shaped like the letter J. This pouch is made from your ileum, a part of your small intestine. It connects your small intestine to your anus, which allows you to poop on a toilet.
Zecchino had the procedure in three stages over the course of six months. Schwartzberg says surgeons plan for three stages when a patient is quite sick or, like Zecchino, they’ve been trying medicine after medicine without success. If you’re otherwise healthy, he says, your surgeon likely will recommend a two-stage procedure.
The hardest part for patients to accept at first, says Schwartzberg, is that the procedure will require a temporary external ileostomy pouch.
Life With an Ileostomy Pouch
Between your first and last surgery, you’ll need an external pouch to collect your poop. That’s because you won’t have a working internal system for passing poop until your J-pouch is connected. This pouch connects to a hole that your surgeon will create in your abdomen, called a stoma.
“Often, the worst thing patients imagine is not the surgery itself but the fact that they’ll need a temporary bag,” says Schwartzberg.
Often, their feelings about the external pouch change shortly after surgery. Why? They no longer have UC symptoms and don’t require medications, says Schwarzberg: “All of a sudden, they no longer look at the stoma as the worst thing in the world but as a lifesaver.”
The important thing to keep in mind: This will be your life for only a few months.
What Schwarzberg tells his patients: “You will adapt. You can do anything, from skydiving to mountain biking to professional sports. There’s absolutely nothing you can’t do with a stoma. And for most people, it’s temporary.”
As unpleasant as Zecchino found the external pouch — they have to be emptied several times a day — he found himself more confident in his own body now that he felt so much better. For example, he went to the pool without feeling nervous or embarrassed about the pouch. The fact that it was only temporary helped.
“It was just going to be my life for those six months,” he says, though he admits to worrying that it could become permanent if his J-pouch surgery proved unsuccessful.
Schwartzberg says that about 5% of people who have J-pouch surgery don’t do well and will eventually need a permanent ileostomy. But, he says, some medical centers specialize in redoing J-pouch surgeries. Be sure to talk with your doctor about this option if you face this circumstance.
Facing the Fear of Surgery
When Zecchino learned he’d need surgery, he was 20 years old and in good health apart from his UC. He also had a surgeon who inspired his confidence. Still, he says, he’d never been through anything like this before, and it had him on edge.
“It was nerve-wracking and scary,” Zecchino says of the period leading up to his procedure.
He found that it helped to remind himself just what he would gain from the ordeal.
“A part of me was happy that I was going to go through with it and give myself the chance to get my life back on track and be able to have somewhat of a normal life in the future after going through that whole process,” he says.
That’s just how it worked out.
Zecchino spent about a week in the hospital after the first procedure, in which the surgeon removed his colon and set him up with his temporary pouch.
“As soon as I went through that process, I felt great,” he says. “Technically, I didn’t have the disease anymore.”
Does Surgery Cure UC?
Some experts consider the procedure curative because it removes the diseased parts of your digestive system. This puts an end to UC symptoms.
However, Schwartzberg does not think of it as a cure for UC because the inflammation can still occur in other parts of the body, such as your eyes, skin, and liver. This may require treatment, including the types of medications that you may have taken for UC before surgery, such as biologics. But for many patients, he says, UC medicines will no longer be necessary after surgery.
“We immediately get them off all medication,” he says.
Life After Surgery
Zecchino had his second surgery two months after the first. His rectum was removed, and the J-pouch was created and connected to his anus. After another two months, in November 2018, his surgeon reversed the ileostomy and attached the J-pouch to his small intestine. Each procedure was a success, followed by a hospital stay of 7-10 days.
The result? No more UC symptoms.
“I had no more urgency to use the bathroom, I wasn’t going to the bathroom 20 to 25 times a day, there was no blood, and my stools were more fully formed,” Zecchino says.
The J-pouch has less capacity than the colon and rectum it replaces, but it will stretch over time and become able to hold more. This means that at first you’ll have more frequent trips (up to 12 times a day) to the toilet than in your pre-UC days. That number usually goes down over time.
“I still do go to the bathroom anywhere between three and five times a day,” Zecchino says.
The procedure also has the risk of complications. The most common: pouchitis, or inflammation of the J-pouch, which Zecchino has experienced more than once.
Most likely to occur during the first two years after surgery, pouchitis can cause diarrhea, stomach cramps, fever, and other unpleasant symptoms. It’s typically resolved by a one- to two-week course of antibiotics, Schwartberg says. But he adds that it can become chronic and may require redoing the surgery.
After several weeks of rest and recovery, Zecchino returned to the gym for the first time on New Year’s Day in 2019. He started by lifting 5-pound weights.
“I was just trying to get my body to understand the movements again and trying to get some athletic ability back,” he says. “And I wanted to make sure I still had it mentally to be a football player.”
Lessons Learned From Surgery
Having a goal helped Zecchino get through his three surgeries and recovery. He considers his life now to be 99% of what it was before his diagnosis. His advice for those facing surgery for UC: “Whatever it is that you want to do, your dream or goal, stick to it and use it as motivation to help you through the tough times. For me, I had football as something to work toward.” In the spring of 2019, he joined Purdue University’s football team.
He also advises people with UC, particularly those facing surgery, to pay attention to their mental health.
“Looking back, I now realize that I was depressed without knowing it,” he says. “From a mental standpoint, it was definitely traumatic, and I was down in the dumps.”
That has changed.
“My life is exponentially better than it was before surgery,” he says. “I’m able to go out socially. I’m able to go out to dinner with friends. I’m able to travel. I have my life back.”
Zecchino also recommends connecting with others in the UC community through organizations such as the Crohn’s and Colitis Foundation and, if you’re an athlete like Zecchino, Athletes vs Crohn’s & Colitis.
