Living with Crohn’s disease

Virginia Driftmier

More than 700,000 Americans are affected by an irritable bowel syndrome called Crohn’s Disease. Countless others are diagnosed every day.

At the age of 9, my older sister was diagnosed with Crohn’s. Two years later, when I was 9, I was diagnosed with it as well.

The disease was first described in 1932 by Dr. Burill B. Crohn. However, it wasn’t until the 1990s that medical researchers began making significant progress in figuring out the causes and developing successful treatments for Crohn’s disease.

Crohn’s is an auto immune disorder – a chronic inflammatory condition of the gastrointestinal tract. The exact cause of Crohn’s disease has yet to be pin-pointed. Researchers are confident that stress is the greatest trigger of Crohn’s symptoms.

They also believe that, while partially genetic, environmental factors play a great role in the disease. Being a chronic condition, those affected by it will have flare-ups; meaning there will be periods of time when the disease seems to be at its worst and causing severe problems that could lead to hospitalization.

At other times, it can be in remission and not showing any symptoms at all. It is most commonly seen in those between the ages of 15 and 35. There are always exceptions, however, like my sister and I.

Being a medical condition less common than others, not many people know exactly what it is and what it can mean for those affected. I know countless people who have never heard of it.

Since it inflames and damages the digestive tract, it causes numerous symptoms and body malfunctions. Most that have the disease can’t absorb nutrients properly. They suffer from weight loss, stunted growth, excruciating abdominal pain, unpredictable bowel actions, and drastically altered diets.

However, each case varies. A self-injected medical treatment called Humira was released in the early 2000s, originally developed for rheumatoid arthritis. After going through several medications – each one eventually not working – my sister was put on Humira when she was in high school. All of her symptoms began to drastically improve and, before long, she was in full remission.

I, however, have not had the same good luck with medication she has. When I was diagnosed, I was put on several antibiotics and steroids. After a couple years, it was clear that those treatments alone were not keeping the symptoms of the disease at bay.

I began a biological treatment called Remicade – a three hour IV infusion once every six to eight weeks. This seemed to work beautifully until I was about 14. Then, my symptoms began to come back sooner each time, and I began having more infusions, eventually every three weeks.

Then, my doctor suggested I switch to a new treatment, since it seemed I had stopped responding to Remicade. I, then, started the same medication that had been working so well for my sister, Humira.

Humira seemed to work pretty well for about four years while I was in high school until my senior year. I began having more symptoms than usual. I quickly lost over 30 pounds and was in and out of the hospital. It seemed that the Humira was, in fact, working in the opposite way it was intended to, causing problems instead of solving them.

My doctor took me off the medication and switched me to oral antibiotics and steroids. After having a 12th or 13th colonoscopy, my doctor discovered there were areas in my intestines that were beginning to close up. Surgeries to dilate those areas became a routine part of my treatment every four to six months. While not totally gone, my symptoms began to calm down.

My health was at a shakily stable level when I moved to Mississippi for college when I was 19. Classes begun, and the workload grew, drastically increasing my stress levels, and in turn, triggering all my symptoms.

At the end of my very first semester in college, I had to drop out of school and return to Seattle in  order to receive the health care I needed. In Mississippi, we found no doctor/surgeon anywhere in the state did the type of procedures I needed every few months or so. As a result, I moved back to Seattle to get my health under control.

While back at home, I was put on a new self-injected biological medication called Cimzia, along with anti-anxiety medication. After a few months, I started noticing a significant difference in my overall health. My symptoms had decreased, and I was calm, focused, and had a normal appetite. I was readmitted to the University of Mississippi and was able to move back in the fall of 2012.

Since then, I have moved my primary health care to the University of Alabama in Birmingham, just a short drive from Oxford. I am on a new medication, yet again, and hoping improvements will finally stick.

It is my goal to help raise awareness about Crohn’s disease. I encourage those affected by it to try their best not dwell on their condition and live their life as fully as possible.

However, it is not a condition to be taken lightly, as it can be a very sensitive issue to discuss and extremely debilitating at times. It is this awareness that will promote further research and progress in Crohn’s treatment that will benefit hundreds of thousands of people.


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