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Crohns Research Foundation

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1 Story from Volunteers, Donors & Supporters

1

General Member of the Public

Rating: 4

Crohns disease is debilitating and painful. My daughter had been diagnosed when she was 17 years old in her senior year of high school. She is now 22 years old. I remember her sharing with me at various times throughout the school year that she was not feeling well when I would wake her in the morning to get ready for school. Given our relationship was open and she could discuss practically anything with me, in my mind, I thought perhaps she was avoiding an encounter with a peer student and that she just did not want to go to school. Little did I know that was entirely not the case. During that time, as I look back on it now, it was rather heartless of me to consider that for one moment there may be truly something going on with her health. Being a single parent and trying to maintain a career, raise a child, and pay a mortgage, I did not have time to address any health concerns. Looking back to my teenage years, I know I pulled some of those tricks with my mom when I was my daughter's age. And yet, I knew she was different. When she came to me and shared that she was doubled over in pain and bleeding rectally, my first thought was to head to the nearest emergency room, and fast! I certainly tried to understand what she was verbally saying and to connect with that unfortunately, I did not get it. That next day, we went to her doctor who then referred her to a gastroenterologist. This is where we got our questions answered and that we needed to pursue agressive treatments. During her visit, a colonoscopy revealed that she had Crohns' disease. Wow, what the heck was that? The doctor recommended aggressive treatment to decrease the inflammation of her large intestines. Remicade infusions had been the answer. I would drive her to the hospital and sit with her during the infusions and once completed, she was completely wiped out. I remember seeing that same behavior when my brother would go have his radiation therapy for lymphoma. He died at 26. Now this had quickly gotten my attention! Moving forward, she seemed to improve. The cost is extremely high where infusions administered by a hospital would range in cost, and hers was alarmingly $20,000.00 per infusion! The steroids followed. We later found that there are specialized clinics that are available in our area and the cost was significantly less to the tune of $4000-$5000 per infusion. Soon, bankruptcy was my only way out and losing my home. The economy was bleak and I was laid off from my mortgage underwriting job a few times over a 3 year period for 9 months each as my job is tied to the housing market and overall economy. It is difficult to see a teenager go through these kind of health issues and in her senior year of high school. She just graduated from Sonoma State University pursuing her teaching credentials. She is overly concerned of how this is or may affect her when she is in the middle of class teaching 7th & 8th grade students. Because there is no known cure, and the medicine used to relieve her symptoms cause other health issues, the last resort known is to remove the diseased intestine and if that does not work, a colostomy bag. Not glamourous at all! I am truly concerned with this disease as it is growing in numbers affecting all ethnicities. I cannot rate this site however, I can share with you what my daughter has experienced over the last 5 years. I hope for a cure one day soon. I support this with all my heart and soul.....a cure would be amazing!