Chronic Intestinal Pseudo-obstruction: Hannah’s Story

Now 15, Hannah refuses to allow chronic intestinal pseudo-obstruction (CIPO), or the colostomy bag she’ll wear for the rest of her life because of it, define her.

Whether she’s at home relaxing, out with family or friends, playing field hockey or lacrosse, or working toward any one of her many goals, it makes no difference to this busy high school sophomore.     

“Just because I have a disability, I’m still a normal kid,” says Hannah, whose voice exudes confidence and spunk.

But having dealt for years with CIPO — a life-threatening disorder in which intestinal nerves or muscle problems prevent food, fluid and air from moving through the stomach and intestines — Hannah knows better than to ever downplay the seriousness of her challenges.

It’s actually because of all that she’s been through, coupled with inspiration from countless nurses who have comforted her and calmed her fears along the way, that she’s already decided on a career path.   

Hannah says:

“I want to be a nurse at CHOP.”

More specifically, Hannah wants to work with CHOP patients who have undergone surgery or are experiencing gastrointestinal disorders. Both are issues Hannah is all too familiar with since doctors at CHOP diagnosed her four years ago, during a 6½-month hospital stay that included multiple surgeries and other GI procedures.

One just needs to listen to Hannah as she talks about the back-to-back operations she had near a few years ago to see how well-suited she is for her chosen field. During the first surgery, doctors removed three feet of her twisted bowel, leaving her with a colostomy pouch and a gastrostomy tube (G-tube) to deliver nutrition and medications. Two weeks later, she returned to the OR due to a rare duodenal hernia. Medical terms roll off her tongue like a second language

“I’ve been doing self-care since I was 10,” says Hannah, referring to managing her colostomy pouch and G-tube, as well as a jejunostomy tube (J-tube) that doctors inserted a couple months after her initial surgeries to control her fluids. “I already know a lot … I was that girl who gave myself medication. I felt like a doctor.”

And what about that Broviac, a type of central line she had inserted so she could receive total parenteral nutrition (TPN) — essentially her food — through a vein versus her GI tract.

“That was removed in July,” Hannah says, adding that doctors replaced it with a port, which unfortunately had to be removed due to irritation and concerns for infection.

Finding answers at CHOP

It had been a long road for Hannah and her parents, Lisa and Fred, before coming to Children’s Hospital of Philadelphia (CHOP). Gastroenterology Surgeon Joy L. Collins, MD, and pediatric gastroenterologist Kristin N. Fiorino, MD, both with CHOP's Suzi and Scott Lustgarten Center for GI Motility, finally put a name to the relentless bouts of vomiting, nausea, dizziness and stomach bloating plaguing Hannah since she was a little girl.

Generally, an intensely private person, Hannah says she wants to share her story because she knows her experience might help someone else. 

Hannah was about 3 years old when her mysterious stomach issues began, spurring a parade of visits to their local hospital in Morristown, NJ, that continued over the next several years. “It was one visit after another, but no one could tell us what was wrong,” recalls Lisa, Hannah's mom.

Hannah remembers being at camp when she was 7 or 8 years old and a concerned counselor calling her mom because she wasn’t eating. She was already severely underweight at the time. “My mom knew that I wanted to eat, but I couldn’t,” says Hannah.

Citing Hannah’s stubborn streak, Lisa said her daughter often fought going to the hospital. Hannah was 10 when the pain was finally so intense that she knew she needed help.

Weight loss, distended tummy

“I was skin and bones with a pregnant stomach,” Hannah says, matter-of-factly. “I was on the floor, crying hysterically, and I said to my mom, ‘I need to go to the hospital.’”

An X-ray taken at the local hospital showed Hannah’s colon was twisted. Hannah was rushed by ambulance to CHOP, where Dr. Collins said Hannah needed a colostomy, an operation to divert part of her colon to an artificial opening in her abdomen, bypassing the damaged part of her colon. Hannah received the news two weeks before she turned 11.

“I remember going into the OR and waking up with a (colostomy) bag,” says Hannah, adding that CHOP's doctors and nurses helped her through the scary situation.

She celebrated her 11th birthday at home by getting her nails done, but two weeks later Hannah was back at CHOP for duodenal hernia surgery. By the time she was discharged from CHOP, 6½ months had gone by. 

“They wouldn’t release me until they'd made a complete diagnosis,” says Hannah. Considering there are only about 100 cases of CIPO diagnosed each year in children, it takes a hospital with expertise to find the answer.

Meet DJ Hannah Banana

Hannah speaks to Niall Horan from One Direction at The VOICE Center. There were many good moments of Hannah's hospital experience. Making friends with all the nurses helped fill her time. She enjoyed visits with therapy pets and playing DJ Hannah Banana and hosting BINGO on The VOICE, an interactive closed-circuit TV channel endowed by the Ryan Seacrest Foundation to provide CHOP patients with an outlet for their creative energies and to learn more about multimedia.

Through tickets she received from CHOP — which were donated by a generous family — Hannah saw Taylor Swift in concert after her discharge from the hospital. She also visited Disneyland, thanks to the Make-A-Wish foundation.

Lisa can’t say enough good things about CHOP and its multitude of opportunities for patients and families — from the cheery atmosphere to the “wonderfully supportive” staff.  Reading about CHOP and all its accolades is one thing, Lisa says. "Living it is another."

She was particularly impressed with a huge board that keeps track of every surgical patient, from the moment they are wheeled in until they reach recovery. Knowing where her daughter was at every step was helpful to the worried mother during Hannah’s many procedures.

“My eyes were crazy-glued to that screen,” she recalls.

Giving back to other CHOP patients

Hannah’s parents are in awe of how their daughter has adapted to all that has happened to her and are proud of how willing she is to give back to others. When Hannah turned 13, she raised about $700 and a pile of toys for CHOP’s Child Life Program as part of her bat mitzvah service project.

“Hannah is my hero, an inspiration," says her dad, Fred. "I don’t know if I could be as strong as her.” But Hannah is modest, saying she has good days and bad, but is determined to push through any obstacle in her path.

“Right now, I’m doing well,” she reports. She's playing field hockey and looking forward to turning 16 — and one day, getting her own car.