In the fall of 2002, at the age of 24, I began to have episodes of severe abdominal cramping and frequent, urgent bouts of diarrhea. At first, I thought these episodes were due to something I ate or that I was fighting off a bug of some kind. After several months of these symptoms, I knew something was not right.
Symptoms became more frequent over the next several months, and I finally called my primary care provider. She referred me to Dr. Christy Dibble at Women & Infants. I met Dr. Dibble in May of 2003, and she ordered a series of tests including blood tests, a FOBT (fecal occult blood test) and a colonoscopy. The blood tests revealed a high level of inflammation present in my body. The colonoscopy showed inflammation on areas of the rectum, large intestine and at the very end of the small intestine. I was given a diagnosis of Crohn’s disease and began my treatment. Crohn’s disease is a chronic condition that causes inflammation in the intestine. It is an autoimmune disease where the immune system begins to attack portions of the digestive system.
I was prescribed several types of medications including antibiotics, a corticosteroid, and anti-inflammatories. I was taking more than 20 pills a day. Over the next year, I saw Dr. Dibble every three months to monitor my progress and adjust the medications. I had to switch antibiotics when the first one prescribed began to make me sick to my stomach. The medications were doing nothing to alleviate the abdominal cramping. I was prescribed another medication to relieve muscle spasms in my colon. The cramping began to improve after the addition of this medication.
With the frequent and urgent bouts of diarrhea not improving, Dr. Dibble mentioned a new type of medication, a biologic therapy called Remicade, being used to treat Crohn’s disease. I began treatments of Remicade in the fall of 2003. Remicade is an IV-infused medication given over a period of several hours. After each Remicade treatment, my symptoms went away for several weeks at a time. I thought Remicade was the greatest thing since sliced bread. As the treatments continued, the staying effects of the Remicade seemed to lessen each time I received it.
I had my second colonoscopy in the summer of 2004, and the inflammation appeared to be lessening. I continued with my Remicade treatments as well as my oral medications and was feeling better. During my 5th treatment of Remicade, I had a reaction to the medication. My face flushed, I had pains in my chest, and I began to vomit. Even though I liked Remicade, my body had decided it didn’t care for it anymore.
It has been several years, many pills and four colonoscopies since my diagnosis. The diarrhea continues to affect my everyday life. On good days, I only have to go to the bathroom 4 times a day. On bad days, I run to the bathroom 6 to 8 times per day. Some nights I am woken up several times out of a sound sleep to go the bathroom. Those are the nights were it might be easier to sleep in the tub.
I have learned to control certain aspects of my life to control the Crohn’s. I cannot eat certain foods such as lettuce, spicy and high fat foods. I cannot drink milk or alcohol without having a reaction. Cheese and ice cream are two “mights” in my life. They “might” send me running to the bathroom, or they “might” be tolerated just fine. It depends on the day, but usually I am willing to take the chance for a little ice cream.
Stress is another uncontrollable factor which sends my intestines into an uproar. I have had to withdraw from my college classes halfway through the semester and take time out of work because of stress-induced reactions. I have learned to reduce the number of classes I take per semester and to try to plan things out in advance to reduce the stress in my life. Having Crohn’s is stressful enough without adding life into the mix.
Everyday is a guessing game that you learn to deal with. Most days are good, with a few terrible ones thrown in here and there. There is one benefit to having Crohn’s: I know the location of almost every bathroom in every store and restaurant in Rhode Island and southeastern Massachusetts.