Patient Stories

This Was NOT the Plan

Two months before my son's 12th birthday things were great. He was crushing it; straight A’s, top ten in the state in swimming, incredibly nice, funny, and polite, the perfect big brother to his three younger siblings. Then he got a stomach ache. It got worse. Three days later he was having emergency surgery to remove a baseball sized abscess that had ruptured and 4 ½ feet of his small intestine that had perforated and adhered to his stomach. The surgeon left 2 feet of severely diseased intestine in the hopes it would heal and attempt to avoid a ‘short bowel’ cripple scenario. He felt that with a top down treatment approach, the strongest medicines available, the diseased intestine might heal. He left the hospital fifteen days later and twenty pounds lighter. Unfortunately, even the Humira and Methotrexate could not stop the progression of his disease. After three months on a very restrictive Specific Carbohydrate Diet, two courses of steroids and two second opinions at Mayo Clinic and UCSF, he had his second surgery. This time the surgeon cut out all diseased intestine including his Ileocecal valve and said that my son would no longer need medicine as there was no remaining active disease.

The one thing we are starting to learn for certain is that our son will handle this.

He stayed on the medicines. He continued to be exhausted, grumpy, and angry with the world. He stopped going to school missing nearly a year and a half of Junior High. He didn’t get out of his pajamas for seven months. There were hundreds of pills under his mattress. His blood work was normal, so what was wrong? He had a colonoscopy/endoscopy or MRE every 6 months. We discovered that even though everything in the colonoscopy looked good, nearly all the biopsies showed active disease. He felt terrible, was hardly growing, and was not gaining weight because he was still fighting the disease. Three years later we have found one lab test, fecal calprotectin, that appears to accurately show his levels of inflammation. Today he is over half way through his freshman year of High School. He misses school at least one day per week and has had two flares in the last 4 months. To control the inflammation he has stopped eating solid food and started drinking Boost as his sole source of nutrition. The great news is that his elemental diet has put him into remission for the first time in three years. He says, “I can’t remember the last time I felt this good!” He is more up-beat about life, is gaining weight, has more energy and even joined the High School swim team.

Crohn's is such a personal disease impacting each child in a different way. For our family it has been endlessly frustrating. There are no sure-fire solutions, and just when we think we are starting to understand the causes, effects and remedies of his disease, something else happens. The one thing we are starting to learn for certain is that our son will handle this. He is incredibly strong and keeps getting stronger and smarter about his health with every hurdle he surpasses. This is just NOT what we had planned.

Interview: The Specific Carbohydrate Diet

A new dietary plan, the specific carbohydrate diet or SCD, often helps alleviate the symptoms of Crohn’s disease, an inflammation of the intestinal tract. However, the restrictions that the SCD imposes such as giving up breads, rice, potatoes, noodles and other starches can be quite taxing. Simon, an 11-year-old boy with Crohn's, and Hava, his mother, give first-hand experience as to how it is to be on SCD and the adjustments that one must make for an intense diet.