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.

On getting a diagnosis, undergoing procedures and coping with IBD …

The hardest part was when I felt all this pain, and I couldn’t do anything about it. When I felt more pain, I couldn’t lie down, and I had to take baths for it to go away. The first couple of doctors I saw said nothing was wrong with me. They had no idea how bad it was. I felt the worst I’d felt in my whole life, but everyone told me nothing was wrong. Even both of my brothers said it was in my head and I was making it up, which made me mad.

Child, Crohn’s disease

Tests like endoscopy and colonoscopy might be scary, but don’t worry about it. You you won’t feel a thing! You count back from 100, you pass out, and then you wake up, and it’s over. You don’t even have a dream — it’s that quick.

Child, Crohn’s disease

I started talking more about my colitis in college. … It definitely made my life much easier once I started telling people, because I felt much more comfortable about myself and more comfortable with what I was doing. You find more and more people who know somebody with Crohn’s or colitis or have it themselves and who really know what they’re talking about, and it’s really nice when you can actually talk openly about it with somebody.

Young adult, ulcerative colitis

Listen to your doctors! They put you on a medication for good reason, so try really hard not to miss doses. Don’t give up — just keep fighting.

Young adult, ulcerative colitis

Parent perspectives on coping with their child’s IBD …

It’s really tough for parents in the beginning; you don’t know what to expect. But just keep positive, and keep going. Try new medications; if the first one doesn’t work, try another one, because there are so many out there. You have to know your own child and what they’re capable of doing.

Parent of a child with Crohn’s disease

For me as a mother, there was a lot of guilt. I thought, “OK, what am I doing wrong as a mother — why is my child so sick?” It was a relief to realize it wasn’t me; it’s just the way his body is.

Parent of a child with Crohn’s disease

I found I was constantly asking questions, and the answer that I wanted just wasn’t available. Why is this happening? What is this going to do? How is this combination of medicines going to work? There are so many questions when you’re in the middle of it, and you just have to just wait and see.

Parent of a child with ulcerative colitis

Educate yourself. Keep the faith. Get your own support someplace, too. Take care of yourself so that you are better able to maintain a good frame of mind.

Parent of a child with ulcerative colitis

Check out our new website, and read more about living with IBD and other health conditions at the Experience Journals.