Viewpoints

Opinion and analysis on managing care from experts and KOLs

How IBD Became One Parent’s Nightmare


Frank Diamond

My newspaper days ended more than 20 years ago, but still they resonate. That’s partly because you can find almost any sort of eccentric in a newsroom: They’re the last bastion of the unemployable.

Joe stood out because, although he enjoyed the bedlam and shenanigans, he was as normal and good a guy as you’d want to meet, and would be accepted in any business. (So, of course, we nicknamed him “Mr. Normal.”)

Joe had an abnormal burden to carry as a parent, however. He had three children, and his middle child suffered from inflammatory bowel disease. There were always new medical treatments, then, when they failed, operations, and then hope for a normal life. Finally. Then—damn!—a relapse, and yet another anguished go-round for what the family prayed would be the last time. It never was.

I caught up with Joe about 10 years ago at a bar in Doylestown, Pa. In the course of some soul-spilling Joe told me that, “Someone very close to me died.”

His daughter.

“Did she die of that disease, Joe?”

“Yes, you could say that.”

I didn’t press. Some years later, I met another colleague who told me that Joe and his wife found their daughter. She’d hung herself from a tree on their property rather than go through yet another operation. She was in her early 20s.

It haunts me.

Our story on IBD investigates just how all-consuming that problem can be. Depression is just one of the many deviling byproducts. Patients with IBD often have many tests, trips to the emergency department, and hospitalizations for severe pain that is not caused by IBD, but related to mental health disorders.

It can be living hell. Read the story. For Joe’s sake.

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