Will’s Story: Recall Could Mean Starvation for Crohn’s Disease Patient

The rarity of certain diseases often stops them from having numerous treatment options, and the variability of patient experiences makes it so that each option does not necessarily work for every patient. Will Rowan, a 16-year-old from Virginia, knows this firsthand, as there is only one thing he is able to eat due to his Crohn’s disease. Because of his severe allergies, the only thing safe for him to eat is EleCare Jr powdered infant formula. Unfortunately, the FDA has issued a recall for this formula due to possible links to bacterial infections. Now, Will and his mother are frantically trying to find more of this product to ensure that he does not starve.

Will’s Story

Will lives with Crohn’s disease, which is a form of inflammatory bowel disease (IBD). He was diagnosed back when he was just seven years old after he stopped growing. Doctors told him he had Crohn’s disease, eosinophilic esophagitis (EoE), and eosinophilic gastroenteritis. Because of this, he is fed through a permanent feeding tube, and it wasn’t until the family found the special formula that they noticed an improvement in his symptoms. He needs ten cups of the Elecare Jr formula daily, as essentially every other food is deadly to him.

Back in February of this year, the FDA announced the recall after possible links surfaced between the formula and bacterial infections. Three children have reported hospitalizations – one of whom has passed away – due to these infections. The FDA is investigating to see if there is in fact a connection.

The day prior the recall, the Rowan family received a 58-can shipment of the formula – which sell for $40 a can. Unfortunately, after hearing the announcement and checking the cans, Will’s mother saw that every can they had was recalled. That meant her son had no food. To combat this issue, she took to Facebook and pled for help. She was not going to sit and let her son’s two options be starvation or anaphylaxis.

In her post, she related that she was willing to pay and drive anywhere to get this formula for her son and begged for anyone who could to help. Luckily, her post worked, and later that day she had four cans for her son. A mother across the country in Utah sent six more. Even more uplifting was the amount of support the Rowans received. Total strangers were calling the formula’s producer and waiting for hours to speak to someone, while others were scouring groceries stores for the cans.

Hopefully the issue is resolved soon and the producer of the formula, Abbott Nutrition, can continue to make it. They’ve heard Will’s story, and they want to ensure the caregivers and patients who trust them to continue to do so and believe in their quality control. The investigation is currently ongoing, so the hope is that it is resolved quickly and without issues.

About Crohn’s Disease

Crohn’s disease, which falls under the larger umbrella of inflammatory bowel disease (IBD), is a rare disorder characterized by inflammation of the digestive tract, most commonly the colon and ileum. Symptoms typically appear in episodes before a patient goes into remission, which is a repetitive process. They may include:

  • Diarrhea
  • Fatigue
  • Abdominal pain
  • Cramping
  • Fever
  • Blood in the stool
  • Mouth sores
  • Reduced appetite
  • Weight loss
  • Pain or drainage around the anus

It’s important to seek treatment for Crohn’s, as it can lead to complications such as anal fissures, colon cancer, malnutrition, ulcers, bowel obstruction, fistulas, and more. Doctors are unsure as to why exactly these symptoms occur, but they believe that it is due to a combination of hereditary and immune factors play a role. However, they have identified risk factors, such as a family history, Ashkenazi Jewish heritage, cigarette smoking, being under age 30, NSAID use, and living in an urban/industrial area.

You can find the source article here.

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