As I said in my first page. (this is post #1) I will tackle my story chronologically (of course, if there are any questions that I have not covered info on yet, please feel free to ask). I began with this disease at age 8 with severe bellyaches. I can remember being told by my parents to finish my milk (of course, they meant well, not knowing what was causing my pain), half an hour later I would be on the couch rolling on my abdomen with a pillow against my belly. I found this action comforting, helping to relieve the pain at that time. For 2 years I was taken to the local clinic for diagnosis and for two years I struggled and battled with bellypain, high fevers, weight loss, loss of appetite and stunted growth. If anorexia had been prevalent back then, for sure they would have diagnosed me with it.
I remember one night, my parents were so worried about me, especially my dad who was thinking that maybe I had the illness he had. {The doctors made a mistake with him; they diagnosed him with ulcerative colitis, which is an inflammatory bowel disease which only affects the colon. Later in his life, after he had an ileostomy for severe colon disease (ileostomy: the entire colon is resected and the end of the small intestine–the terminal ileum–was brought out to the surface of the skin creating what is called a stoma. A pouch is then applied around this stoma to “catch” the feces.) He continued to have abdominal pain leading to his real diagnosis of Crohn’s Disease.} Anyhow, my mother took me once again to the ER because I had a fever of 104 degrees. Crohn’s Disease in children is more likely to appear as fevers, belly pains and stunted growth (not large amounts of diarrhea as occurs later–it didn’t take me long to have the diarrhea. For me it was there from the start. As you can see this is a very embarrassing disease. You could see why people diagnosed with it don’t want to talk about it. Diarrhea and gas are common and can occur at the most inopportune time (like when you’re at work as an RN in a patient’s room, gonna crap your pants and have nowhere to go but to their bathroom for fear of it coming down your legs, I ‘ll tell you some funny stories later in this blog). The doctor, who I later worked with as a nurse, was incompetent in my opinion. He tried to tell us that it was all in my head, that I needed to see a psych worker. He accused my mother of family stress causing my symptoms (and this is before my 8 yr old brother was killed which did cause tremendous amounts of family stress). He rolled his eyes at the nurse thinking we didn’t see him because my fever had come down to 102 degrees (of course, after a couple of Tylenol which my mom had given me). My family and I were so upset to hear that “it was in my head”, they finally had enough of small town doctors. I do have to say Crohn’s Disease was not diagnosed often when I was that age, it was even called by another name, more technical (Instead of the doctor who discovered the disease–Dr. Crohn), regional enteritis. Luckily I had an aunt who was an RN and one who lived in Boston who both helped me to get into Boston Children’s Hospital. I’ll end it here and next post will discuss my adventure as an 11 yr old in a big city hospital.
I haven’t mentioned it but I have to say, I was only human during all the unknown, the pain, and other symptoms. I was really scared as a child. But even then, I had my faith and Jesus helped me through it all as well as my family and friends. Stay tuned for my next post where I will be discussing my first time in a bigtime hospital as a little girl. will try to find pictures to post as well. The pictures I posted on my second page go with my first page.
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