Ashley's Story
How IBD Can Change A Life

Ashley, 16

Today, after living with Crohn's Disease for four years, I can honestly say I do not remember what it is like to be "normal". It is hard for me to remember what it is like to have pain free days, but I have come to appreciate the brief moments, when I am not suffering.

My pain and five month diagnosis process began when I was 12 in February 2001. I was constipated every week, which is something rare for Crohn's patients because they usually have frequent bowel movements. I distinctly remember having to stay home every Friday from school in Februaury and early March because I had not gone to the bathroom in five days and my cramps were quite unbearable. Soon I developed what appeared to be a hemmroid, and my mother treated it with an ointment. After two weeks and no apparent change in the size of the hemmroid my mother brought me to the pediatrician. By this time my doctor and mother agreed that it no longer looked like a hemmroid but something else. She sent me to a pediatric surgeon five days before Easter. When he looked at it he immediately assumed it was a tumor and that I may have cancer. Immediately, I was scheduled for surgery the next morning, to remove the tumor. The surgery was quite painful and I lived on codine for three weeks afterwards. The results would not come back til Tuesday due to the holiday. Easter was very somber that year in my home, I remember lots of prayers and silence of not knowing what to say. Luckily the tests came back and the tumor was labeled benign. The biopsy said it could not eliminate foreign object or Crohn's disease as the cause. My pediatrician referred me to a GI in mid May as the surgery seemed not to be healing well and I was getting severe stomach cramps and gas pains as well.

I vivdly remember the day when I met my life saving GI. She said she had not seen a bottom like mine ever; jokingly she nicknamed me the girl with the "terrible bottom'. This was saying quite alot becasue she was a well respected and honored doctor in her field. She thought it could be Crohn's, but was not exactly sure because usually one will get the symptoms of the disease before one gets a fistula. She sent me for many tests, which included loads of bloodwork, ultrasounds, X-rays, Upper GI series, and rectal exams, which led to the discovery that I had perrianal disease, but the truth was that I did not have a tumor in the first place I had a fistula which should of never had been removed. Now I had loathed that surgeon so much for putting me through so much uneccessary pain. All of the questions were still not answered because now I was having symptoms of something other than perrianal disease, and not to mention fistulas are a side effect of Crohn's Disease. After a colonoscopy and endoscopy on June 8, 2001 I was diagnosed with Crohn's Disease.

Now my family had its answer so we studied the disease and came up empty handed because there are alot of unknown answers when it comes to Crohn's Disease. After vigorous treatments to get me into remission I enjoyed 2002, almost completely pain free, with a lengthy list of pills which included Asacol, 6MP, Prednisone, and Flagyl. Then in May 2003 I had an obstruction in my intestines and was hospitalized for two weeks. I was on TPN and had a GI tube. After a series of scopes it was clear my disease had progressed. I tried most of the same meds but now I switched to Pentasa instead of Asacol because my intestines were quite narrow. I never fully went into remission, and in May 2004 was admitted to the hospital for another slight obstruction. I was once again on TPN, but I did not need a GI tube. At that point I was bleeding in my intestines, which is never a good sign. I was placed on Remicade infusions and slowly began to live my life. Yet I never went into remission; by now I had not been in remission for two years, and I was losing hope. In May 2005 I was once again, after still not being in remission for 3 years, admitted for 2 weeks because of severe stomach cramps and constipation. I was given extreme laxatives and lived on TPN, until my intestines were stable.

Now two months later I still have pain and hope to be put back on Remicade because now I have begun to bleed in my intestines again. At this point, I am just praying for one day without pain because I have learned that with Crohn's Disease that every day is a new struggle to maintain what is left of my childhood. Yet I have accepted this disease and the battles that I will have to face with it for the rest of my life because my definition of "normal" has changed as I have changed as well.