Billy Ciolino and his family's story
Being a teenager with short bowel syndrome was tough. Billy felt that people saw him as normal on the outside but on the inside, he could see all the scars and the tubes. It was a challenge to trust someone else. Over time, he realized that, “it´s not as bad as it may seem at first.” Now in his twenties, he is able to live a normal life, with a college degree, full time work, and living independently with his girlfriend.
Talk to your doctor and seek an experienced medical center
At age 13, Billy was diagnosed with short bowel syndrome due to a volvulus that restricted blood flow to his small intestine. The local hospital performing the resection did not have much experience with short bowel syndrome and the total parenteral nutrition (TPN) regimen, resulting in symptoms of jaundice, liver failure and infections. Billy´s family got the feeling that the doctors at the local hospital did not know enough about the disease: “They knew the medical way to treat it, but kind of like seeing this once in a while but having no idea of what to do.”
Billy´s parents made the decision to move him to an intestinal failure medical center and they could feel the difference. They knew how to manage short bowel syndrome. They were professional every step of the way, they took the ball and ran with it. They had Billy eating more solid foods, which was just one way they tried to give Billy the sense of a better quality of life. “They tested my limits in terms of having a normal type of life, in terms of eating, drinking, being active, up and out of bed more frequently.”
Set ambitious goals with your doctors, and negotiate what you have to do to reach the next goal
As Billy got older, he took over the responsibility for his TPN. Reducing to two nights a week meant, “for quality of life it helped me out greatly.” The goal is to get him off TPN or get him down as far as possible and Billy keeps negotiating with his doctor. "If I do this, can I get this? If you do that, I'll give you this."
Try to prove people wrong, when they say you cannot do it
Billy does not listen when people tell him what he cannot do. Instead, he uses their comments to fuel his own personal motivation. He enjoys when people tell him that he cannot do something because then he tries to prove them wrong. “Some doctors told me I was never going to eat or drink again. I ended up doing that. They told me I wasn't going to come off of TPN completely: I'm almost there.”