Gut FeelingsFor many years, Ulcerative colitis was a fact of life for our son, Sam. He began showing the disease's debilitating symptoms when he was 2 years and 8 months old. At first, the doctor said "Sam has a stomach flu virus. We see this every day. There is nothing to worry about. He will recover in a couple of days." Soon after we realized that Sam had a serious illness called ulcerative colitis and that its cause was unknown. Sam had several flare ups, many complications, and failed to respond to various medications. ...
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Gut FeelingsFor many years, Ulcerative colitis was a fact of life for our son, Sam. He began showing the disease's debilitating symptoms when he was 2 years and 8 months old. At first, the doctor said "Sam has a stomach flu virus. We see this every day. There is nothing to worry about. He will recover in a couple of days." Soon after we realized that Sam had a serious illness called ulcerative colitis and that its cause was unknown. Sam had several flare ups, many complications, and failed to respond to various medications. We were referred to several specialists and we moved to 4 states in less than 3 years looking for the doctor who could cure our son. Before Sam reached his 7th birthday, he was hospitalized 26 times, had general anesthesia 23 times, had endoscopic examination of his esophagus, stomach, small and large intestine 21 times, had several abdominal CT scans and radiographs, had two major surgeries averaging 41/2 hours each, had 5 blood transfusions, and countless doctor visits. We stayed with him in hospitals for so long that the hospitals almost felt like our home. Sam had countless blood drawings for laboratory tests and numerous intravenous sets, central lines, and stomach tubes for fluid therapy and feeding. Doctors initially tried treating Sam's illness with steroids and anti-inflammatory medications, but none had a lasting effect. He was on several medications for several years. Sam experienced serious side effects of these medications such as impaired growth in height and weight, facial and body hair growth, moon face, and mood changes. He did not grow even an inch in height in 5 years. He also became severely immunosuppressed because of these medications and contracted chickenpox, episodes of high fever, and repeated attacks of colds. Doctors tried juggling his medications for more than 4 years but by March 30, 2001, they had run out of options. We finally accepted the fact that there would be no resolution to Sam's aggressive illness except surgery. Doctors ended up removing his entire large intestine. He started doing much better soon after surgery. He gained weight, started to grow again, and his quality of his life improved tremendously. But he was not free of post-surgical complications. At the time of writing this book, Sam is 21 years old and seemed to appear healthy and to enjoy life.In spite of my medical background as a veterinarian, navigating his illness was very challenging. Any piece of information we received about his laboratory findings felt like a mental shock. This was particularly true during the first few weeks of trying to reach a diagnosis of his illness.Our nerves were in a constant status of high alert. I gathered tremendous information about the disease through searching scientific literature and kept extensive daily notes on his illness.Financially, this illness cost us thousands of dollars. This book was written with the following objectives:1.By sharing our experience, feelings, and the story of our son who was literally ravaged by UC, we hope that patients suffering from this debilitating disease and their families will find this information useful and provide them with kind comfort and support. 2.Patients and their families can arm themselves with extensive and advanced information on UC clear and easy-to-understand language. 3.This book will empower patients and their families with up-to-date information on UC and advice on how to make better decisions about the various treatment options. 4.Real-life practical tips are listed on various aspects of the disease; such as how to choose the right doctor, how to deal with difficult moments at school or at work, how to make traveling easier with UC, how to make UC therapies affordable, how to deal with social challenges, how to lower the emotional impact, how to deal with stress and potential parental self-guilt, where to seek additional information about the disease, and much more.
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