Zachary’s Story

Barb Kuleba, Zach’s mom, said he was 10 months old the first time she found blood in his diaper. He had been having issues with food and digestion since birth, but it was a few more months after that first scary incident before they knew what was wrong. Zach was diagnosed with Crohn’s disease (an autoimmune disease that causes chronic inflammation in the gut) at only one-and-a-half years old, tube feeding was the thing that allowed Zach to start managing his condition successfully.

Once it became clear it was Crohn’s, Zach’s doctors gave him medication, but it didn’t help. Neither did the next kind they tried, or the next. Steroid treatment would go on to cause so much pressure to build up in his brain that he needed a spinal tap to relieve it. Much later, Barb would find out he had an allergy to the whole class of medications used to treat Crohn’s at the time.

When a routine check-up showed five-year-old Zach had not grown in a year, his care team said tube feeding was the way to get him the nutrition he needed. It seemed like a last resort to Barb, something to do when all other options were gone. Little did she know it would be the treatment that turned Zach’s life around. Zach was given a nasogastric (NG) tube.

Soon, Zach would feed for 10 hours at night and still wake up hungry. Letting him eat by mouth during the day didn’t hurt his progress. Typically, people with Crohn’s disease who tube feed only use formula and don’t eat by mouth, because some foods can make the inflammation worse. But since Zach was growing normally and managing symptoms, his doctor said it was okay.

Years later, Zach’s Crohn’s is largely in remission thanks to IV infusions every eight weeks. Zach - who is now 25 years old, a college graduate and an Electrical Engineer who continues to thrive in every way. He never let "obstacles" get in the way of achieving his goals and is now living his life to the fullest.