Stories about: Inflammatory Bowel Disease

Living with chronic granulomatous disease and inflammatory bowel disease: Treating a unique condition requires a special care team

When Priya Moorthy first learned she was pregnant, her plan was to defer medical school for a year, then finish her education when her baby had grown. But shortly after her daughter Vaidehi was born, Priya realized that caring for her would be a full-time responsibility. Even though she wouldn’t be returning to med school in the foreseeable future, raising Vaidehi would give Priya a unique medical education all its own.

A very special type of IBD

Vaidehi-bakesAt just three months old, Vaidehi was diagnosed with chronic granulomatous disease (CGD), a rare genetic immune deficiency that prevents her body from effectively protecting against certain bacteria and fungi. Because CGD is rare (it only effects around 1 out of every 250,000 people), there is a lot the medical community still needs to learn about the disease, especially when it presents with other gastrointestinal conditions

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Our patients’ stories: ’Crohn’s disease surgery didn’t slow me down’

By Mackenzie Sullivan

During my senior year of high school, my appendix ruptured. I felt sick off and on for weeks, but it took almost two months before my symptoms got so bad that I needed to see a doctor.

Mackenzie Sullivan

After learning that I had been living with a ruptured appendix for weeks, I was rushed into surgery. And while the ruptured organ was successfully removed—one of my doctors later told me he had never seen anything like it—my health never really recovered. Whether it was night sweats or horrible abdominal pain, I was constantly dealing with some symptom or another.

As I spent weeks recovering in the local hospital, I began rapidly loosing weight. I dropped to less than 100 pounds, far below the average for a 5″9′ 17-year-old.

As a runner and athlete, I thought I knew my body well—and though I couldn’t have told you exactly what was wrong with me from a medical standpoint, I knew something wasn’t right. As the time ticked by and the symptoms began to worsen, my doctors recommended I visit Boston Children’s Hospital’s Inflammatory Bowel Disease Center, hoping they they could help provide the answers that had eluded my care team up until that point.

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Feeding Felix: overcoming an early onset of Crohn’s disease

Felix

At just 3-months-old, Felix’s stool was regularly showing traces of blood. Alarmed, his mother Jessica Hsu quickly brought her young son to see his pediatrician, who referred Felix to be seen by Boston Children’s Hospital pediatric gastroenterologist Athos Bousvaros, MD, MPH.

Gastrointestinal bleeding in infants is a fairly common problem, often the result of a change in diet or possibly a food allergy. Because Felix was still in the nursing stage, Bousvaros had Jessica remove some potential allergy triggers from her diet to keep traces of them from eventually ending up in her breast milk, and in turn, in Felix. She spent the next few months avoiding dairy, wheat and soy, but Felix’s condition continued.

At 6-months-old, Felix began eating solid foods in addition to nursing, but the blood in his stool remained. To help, Bousvaros placed the young boy on a probiotic, anti-inflammatory medicine, but nothing reduced his symptoms. As time passed, he began refusing solid food—likely due to the fact that digestion was clearly hard on his system—and within a few months he was getting all his nutrition through nursing. The reduced diet took its toll; by the time he was 9-months-old, Felix had almost completely stopped growing and gaining weight.

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5 tips for heading off to college with IBD

For teenagers and young adults with IBD who recently went to college for the first time, the prospect of managing their health without help from their parents or caregivers can be intimidating. To feel more in control of the situation, it may help to make a list of potential concerns your soon-to-be freshman may have about living at school, and then work with him or her to find ways to solve them. This way, if IBD issues do arise, there will be an established action plan to handle them. Some things to consider:

  • Will being at college affect his or her health insurance plan? If so, how?
  • Who will the child call in a medical emergency?
  • Can he or she eat the food in the cafeteria? If not where can safe foods be found?
  • Is there a gastroenterologist near the college?
  • Does the school have Disability Services department or an office of Student Affairs? You may wish to contact them to determine the school’s medical leave of absence policy in case the situation arises.

Young adults who will be traveling or living away from home for the first time with IBD may want to consult this eBook, with more information on the subject.

“Planning ahead for college when you have IBD is helpful, but there’s far more to managing the condition at college than getting to know a new doctor or knowing what foods to avoid in the dining halls,” Docktor says. “It means taking the responsibility of staying on top of one’s medication, exercise and normal sleep routines, all of which can be tough when you are first experiencing campus life and a shift in routine with less structure. But college students living with IBD need to go the extra mile to maintain these routines and always try to put their health first to avoid flare-ups or complications. With education, communication and anticipation, potential roadblocks can be avoided, making sure your college experience is about more than attending school with IBD.”

Other great resources for young adults going off to college include, IBUD.org and the Crohn’s and Colitis Foundation Campus Connection.

For more information on how Boston Children’s treats children with IBD, or to make an appointment with one of our IBD specialists, please call us 617-355-6058 or visit the Inflammatory Bowel Disease Center website.

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