He Had Recurring Pain for Nearly a Decade

It was his usual practice, when possible, to extend his evaluation beyond the colon into the last section of the ileum, the tail end of the small intestine. Most gastroenterologists limit their screening examinations of healthy, asymptomatic patients to the colon. The ileum is not scoped during a routine screening because doing so takes more time and because the chance of finding something significant is small. But Chan had been trained by a doctor who specialized in inflammatory bowel diseases like Crohn’s disease and ulcerative colitis. A simple colonoscopy will reveal ulcerative colitis, when present. But only half of those with Crohn’s disease will have evidence of it in their colons. The chance of making that diagnosis goes up markedly when the terminal ileum is included.

As Chan advanced his scope, he could see that the valve was distorted by scar tissue — so much so that the connection was too narrow for his instrument to enter. Bringing his scope as close to the opening as he could, he saw that the tissue on the other side was an angry red and dotted with ulcers. They would have to wait for the biopsies to come back, but Chan suspected Crohn’s disease. That’s impossible, the man responded. He had no G.I. symptoms at all. No pain, no diarrhea, no blood in his stools. How could he possibly have Crohn’s?

A Hidden Underlying Disease

Crohn’s disease is an autoimmune disorder in which antibodies, the body’s chief defense against infection, mistakenly attack the digestive tract as if it were a foreign invader. Although it can affect the G.I. tract anywhere, it is most frequently found in the terminal ileum. Most patients with Crohn’s will have pain and diarrhea — but not all. In studies of patients with known Crohn’s disease, one in six will have no symptoms at all.

The biopsy results came back consistent with Crohn’s. So did blood tests designed to help diagnose inflammatory bowel disease. But it wasn’t the diseased bowel that was giving the man the pain in his buttocks. It was an associated disorder, a type of arthritis known as sacroiliitis — an inflammation of the joint between the pelvic girdle and the sacrum, the triangular bone that forms the connection between the hips. Although the reason this happens is not well understood, it appears that some of the immune cells misdirected to attack the gut can also attack the joints. Up to 39 percent of patients with an inflammatory bowel disease develop arthritis in some form. And up to 20 percent will develop the arthritis before getting the bowel disease. In this patient’s case, it’s hard to know which came first, because the bowel disease was discovered almost by accident.

To Treat or Not to Treat

Because Crohn’s is usually painful and is associated with complications including bowel perforation, anemia and malnutrition, patients are usually treated with medications to calm down the immune system and reduce the inflammation. These are powerful drugs that suppress the immune system. They are very effective at controlling the pain and destruction but can leave a patient open to infection. Because of that, it’s less clear how to treat patients with asymptomatic disease. For those with no pain and no signs of inflammation, watchful waiting is a common strategy.

The same type of medications are used to treat the arthritis associated with inflammatory bowel disease. The physician wasn’t sure if it made sense for him to use an immune-suppressing medicine while seeing sick patients. His rheumatologist, seeing him put the pad on his seat before gently lowering himself onto the chair, was much less uncertain. She had put many people on these medications, she told him — some of them doctors. Most did fine. He agreed to start taking it. The effect was immediate and amazing. His pain — a regular visitor for nearly a decade — is gone. Even at the end of the day, his walk to and from his car is painless. He still uses the pad at times; those bones are still a little tender. But the rest of him feels great.