When I was first diagnosed with ulcerative colitis in January of 2000, my parents and I felt as if there was nowhere to turn. As my disease rapidly progressed, my family was afraid and alone. No specialist in Pueblo, Colorado would deal with a patient so young, so we had to resort to making long trips back and forth to the Denver Children's Hospital for treatment. Even the doctors there were baffled by the virulence of my disease. My case was unprecedented. There was no support group for us - no one to guide us, to tell us what to do, or to ease our fears. We were utterly alone.
By March of that same year, my colon ruptured, and I underwent two emergency surgeries to save my life. I spent six weeks in the hospital enduring all the horrors that an open abdominal wound, an ostomy bag, abdominal drains, lung drainings, tracheal tubes, nasal gastric tubes, and ivs could bring. Each day was a never ending fight - a never ending misery as I realized the inevitable truth that my life would never again be the same. I no longer had a colon, I had lost a third of my hair, and I was too weak to even walk. What was worse was that I had no idea what to expect. I felt as though I were the only little girl in the world who was suffering so much.
Eight years later, after countless wound scrubbings, a skin graft, four more extensive abdominal surgeries, a perforation in my small intestine, another emergency surgery, numerous painful procedures, medical infusions, terrible drug allergies, and a new doctor at the Mayo Clinic, I am finally back on track. I no longer have an ostomy bag, but the ruthless disease within me keeps me constantly on antibiotics and steroids and in the bathroom six times a day.
As the years went by, my family and I heard more and more stories of other people, many of them children and adolescents, who were suffering with the same kind of disease I was - inflammatory bowel disease. We heard the terrible stories of people having to go to the bathroom upwards to twenty times a day while losing blood and strength as time passed. One woman with Crohn's disease had been suffering with it for about as long as me and was only getting worse. Another boy was told that his only option was the removal of his colon to give him relief from the pain of the disease. It seemed as if history was repeating itself, and because of my experiences, I decided to do something about it.
I could not bear to hear about these other people suffering so much all on their own. I wanted to be there for them, to tell them what to expect and how I was able to get through each day. Most of all, I wanted them to never feel alone in their struggles because that was the worst part of all.
With the help of my parents, I gathered support from community members who were either linked with inflammatory bowel disease, whether through a family member or themselves, or were just caring individuals who wanted to help my cause. Together, we met with a lawyer and set forth the foundations that would soon become the "Never Alone Foundation, Inc."
The "Never Alone Foundation, Inc." is southeastern Colorado's first and only nonprofit organization designed to support youngsters with inflammatory bowel disease and their families through their difficult time. The other six executive board members and I are the leaders of a system of financial support, emotional support, medical discussions, and education. Our bellwether fundraiser is my annual Charity Golf Tournament. Together we have reached over 85 people in the past five months providing them with the support and guidance they need along with the assurance that they are "never alone" in their suffering.
My foundation has shared treatments that have greatly impacted the overall well-being of inflammatory bowel disease victims and has steered people away from dangerous drugs that have only further sickened others. It has helped guide people through the complete process of the preparation, duration, and post trauma that is a colectomy as well, all the while providing comfort to those patients that there are other people out there who know exactly what they are going through. Inflammatory bowel disease is a debilitating illness – one that no one should have to endure. However, when you can share your troubles and receive support from others, it does not have to be as horrible as it would otherwise.
The "Never Alone Foundation, Inc." stands for compassion, empathy, support, and care. It is a beacon of hope for those who feel that all has been lost. Its slogan is "Right on 'Tract'" - keeping you on the right 'tract' with the right information, the right support, and the right care.