Stories about: ulcerative colitis

Experience Journal: Growing up with inflammatory bowel disease (IBD)

back_to_school_with_ibdRoughly 1.4 million Americans suffer from inflammatory bowel disease (IBD), which refers to conditions that cause inflammation of the intestinal tract. Children with IBD may suffer from abdominal pain, cramping, blood in the stools and diarrhea. Early signs may include fever, fatigue and weight loss.

exprience-journal-logo-5 IBD presents in two main forms: ulcerative colitis and Crohn’s disease. While both are lifelong conditions, they can often be treated effectively with regular medication and diet management, surgical care and psychological support.

The IBD Experience Journal, created by the Boston Children’s Hospital Inflammatory Bowel Disease Center and the  Department of Psychiatry, includes stories and experiences from children, young adults and parents to represent the collective wisdom of families living with IBD. Here are some of their stories, in their own words.

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6 tips for a new school year—with inflammatory bowel disease

A new school year presents a lot of new opportunities like new teachers, subjects and the possibility of new friends. But that newness also comes with a good degree of uncertainty, which can be frightening for a student with a chronic illness, such as Crohn’s disease or ulcerative colitis, collectively known as inflammatory bowel disease (IBD). That anxiety can be especially strong if the diagnosis is new, and the upcoming school year will be the child’s first with IBD.

“The first day of school after an IBD diagnosis can be hard, but with some planning it’s quite manageable,” says Michael Docktor, MD, of Boston Children’s Inflammatory Bowel Disease Center. “Most children with the condition are able to quickly return to their normal school routines, all it takes is a few extra steps to make the return as seamless as possible.”

To ensure school is a positive experience for your child with newly diagnosed IBD, Docktor suggests speaking with your child’s teachers, school administrator and nurse as soon as possible to discuss any concerns or questions you may have. Topics may include:

  • Inform. The teaching staff should know that IBD is episodic in nature and the child may need to make frequent or urgent trips to the restroom. Depending on classroom rules, he or she may need special permission to do so.
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Our patients’ stories: Life after ulcerative colitis

When he was younger, having ulcerative colitis was tough on William
When William Tulip was 10 years old, he was excited to leave on a weeklong school trip, but his body had different plans. On day two of his adventure, he got violently ill and had to return home early. For the next few weeks, severe bloody diarrhea and abdominal cramping made his life almost unbearable.

 

His mother Karen suffered as well, namely because doctors couldn’t seem to pinpoint what was wrong with her son. During a weeklong stay at a local hospital, William was tested for salmonella and other bacteria, but nothing could account for his condition. William was then transferred to Children’s Hospital Boston, where doctors quickly scheduled a colonoscopy which indicated that he suffered from ulcerative colitis (UC). Initial treatment involved steroids and several medications; at one point, between meds and supplements, he was taking up to 50 pills a day. Some of these treatments provided temporary relief, but nothing seemed to help for very long.

By the time William was 14 he felt as if he had exhausted all of the available medication treatments, and decided he wanted to undergo surgery to end his ulcerative colitis once and for all. After much planning, doctors at Children’s scheduled a three-surgery procedure that involved first removing his colon and giving him an ostomy, then constructing an artificial large intestine, or pouch, out of parts of his small intestine, before finally removing the stoma and reconnecting his small intestine to the pouch. The decision to undergo such a massive procedure may have been too much for most kids, but William was confident that it was the right path for him.

“I’m a very straightforward person and I definitely get that from my mother,” he says. “It may not make me the easiest kid to be around all the time, but in this case it really helped. Knowing that I wanted this operation and I was ready for it took a lot of the guessing out of the hands of my doctors and parents.”

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