Elizabeth McIntosh, 19, has been through a lot to get to where she is today. Diagnosed with Crohn’s disease, one of the most common types of inflammatory bowel disease (IBD), at age 2, she felt like she was never going to be able to have a normal life – one uninterrupted by Crohn’s flare ups and debilitating abdominal pain.
But after undergoing surgery to remove more than three feet of her colon, she’s finally living the life she’s always hoped to live and wants to offer support to others living with Crohn’s.
“Never lose hope,” said McIntosh, who’s been a patient at Seattle Children’s since diagnosis. “You may have a long journey ahead of you, but you always have to have hope. It will get better.”
Living with Crohn’s disease
At Seattle Children’s Inflammatory Bowel Disease (IBD) Center, where McIntosh received care, a range of IBD treatments are offered to patients to help improve their quality of life, including corticosteroid sparing regimen, surgery and in more recent years, new treatments like nutritional therapies, fecal microbiota transplant therapy and stem cell transplants. Dr. Dennis Christie, a gastroenterologist at Seattle Children’s, has been part of McIntosh’s care team since she was a toddler. He collaborated with the rest of the IBD Center team to develop a treatment plan specifically for McIntosh. Taking McIntosh’s input into account, the team helped devise a plan to fit both her lifestyle and unique condition. Treating a person with IBD is about treating more than just a disease; it’s about treating the whole person, both emotionally and physically, said Dr. Ghassan Wahbeh, director of the IBD Center at Seattle Children’s.
“The IBD Center brings together the expertise from many incredibly talented providers – nurses, psychologists, dieticians, surgeons, dermatologists, radiologists and gastroenterologists – to help children and teens with conditions that can require complex treatment,” said Wahbeh. “Instead of waiting for weeks, taking multiple days off, to see different providers separately, we’re all in one place for the sake of our patients.”
“If a patient comes to Seattle Children’s for Crohn’s, they see a gastroenterologist who is focused on that specific disease, a surgeon who is focused on that specific disease, a psychologist who is focused on that specific disease; we all provide very specialized care to the children and teens we see to provide better treatment,” said Dr. John Waldhausen, chief of the Division of General and Thoracic Surgery at Seattle Children’s.
Opting for surgery
Throughout the years, from the time McIntosh was a toddler, she tried various treatment options – diet changes and medications, both evidence based therapies and novel approaches. Unfortunately, the treatments available at that time weren’t effective.
“We tried everything. At one point I was getting nutrients through an infusion,” said McIntosh. “It got so bad that I couldn’t even drink water without being in agony. I had enough. I was tired of crumbling to the floor in pain.”
Eventually, surgery was brought into the discussion.
“Our team believed surgery was an excellent option for Elizabeth,” said Wahbeh. “Surgery, in experienced hands, can sometimes be the best option we can offer a patient.”
Overall, more than half of patients with Crohn’s disease need surgery for the condition at some point in their life. Doctors at Seattle Children’s hope that newer treatments and a more effective treatment approaches will reduce the need for surgery, but McIntosh had exhausted most treatment options available at that time. And although surgery isn’t a cure for Crohn’s disease, it can be a life changer.
“It’s hard to know how Crohn’s will go after surgery,” said Wahbeh, “however, it can provide a very meaningful change for a patient. We were very transparent with Elizabeth about the benefits and the challenges of surgery. We wanted to honor her wishes in considering all the options we had available.”
In June 2012, McIntosh had surgery at Seattle Children’s. It was a difficult decision, but McIntosh was confident in her care team. Every question she had, the team answered. Every fear she had, the team talked through with her. She knew surgery was the right decision for her.
The surgery that some children need for IBD can be highly technical, but surgeons at Seattle Children’s perform the most in the region, including Oregon, Washington, Alaska, Montana and Idaho.
“It’s not something we do just now and then. We do this surgery a couple times a week,” said Waldhausen. “But Elizabeth’s care really goes beyond just the surgeons. It’s a team approach. And it’s that team approach in our IBD Center at Seattle Children’s that makes outcomes better.”
For McIntosh, whose Crohn’s presented more like ulcerative colitis, surgeons removed most of her colon, about three feet. Surgeons then connected the small intestine to an outside opening made in the skin of McIntosh’s belly so waste could pass to a bag. The bag, an ileostomy bag, was attached on the outside of her body.
“The surgery in combination with a relatively newer anti inflammatory therapy proved helpful in keeping Elizabeth’s bowel healthy with minimal inflammation,” Wahbeh said. “This allowed for the option of having her bowel reconnected. While Crohn’s disease can reappear in the future, we are hoping that with a combination of medical therapy and healthy diet, we will slow its progress down.”
Waking up with a new perspective
“As soon as I woke up from surgery I felt relief,” said McIntosh. “The pain from the surgery was there, but the Crohn’s pain was gone.”
For many patients, transitioning to an ileostomy bag can be a new and challenging experience, which is why Settle Children’s offers very specialized care to children and teenagers who undergo this treatment option.
“It took a lot of adjusting, but I eventually got used to the bag. I couldn’t look at it at first,” said McIntosh. “But I had a really great support system of friends, family, doctors and nurses to help me.”
Life without flare ups
Today, McIntosh is 19 years old and hasn’t had a flare up in almost three years.
“My Crohn’s is still there,” she said, “But I’ve been able to live instead of just merely survive. I’m so grateful to my doctors and nurses. They didn’t just treat my disease; they treated me as a patient. They gave me a second chance at life. I’ve been able to bike, swim, act in plays and sing in musicals. I never thought I could feel healthy, but I do.”
Just last week, McIntosh received more good news from doctors at Seattle Children’s: “Everything looks almost normal.
“I’ve never been told I’m normal before,” said McIntosh. “When the doctor said that, I couldn’t believe it. It was the best day of my life!”
McIntosh has another surgery scheduled to close the ileostomy on May 20, just in time for her high school graduation. As one chapter in her life comes to an end, a new door opens with limitless possibilities.
“Surgery isn’t for everybody,” said McIntosh. “But for those who need it, I want to be there for them and offer support. I made it through and so can they.”
This year, McIntosh will be a camp counselor at Camp Oasis for a second year in a row, a summer camp for children and teens with Crohn’s and ulcerative colitis. She’s looking forward to interacting with more kids who have Crohn’s to offer hope to them by sharing her story.
“I can’t say it enough,” said McIntosh. “Never lose hope.”