What do you know about IBD? Do you know someone who has it? A friend? Loved one? A coworker? IBD is generally divided into two categories of illness: Crohn’s disease and ulcerative colitis. While they can be similar in nature with regards to symptoms, they vary in that Crohn’s disease can occur anywhere in the entire GI tract from mouth to anus and UC is located in the large intestine and colon. Combined, these diseases affect as many as a million or more people in the U.S. alone. I could dazzle you with all the statistics and numbers, but those too often feel impersonal and sometimes like empty facts.
I’d prefer to give IBD a face and a picture of what it really looks like to live with it, to be the one suffering from it and what that entails. More personally, I started having serious Crohn’s symptoms when I was 18 years old. My freshman year of college found me often doubled over with abdominal pain, spending far too much time in the bathroom, and even passing out from loss of nutrition.
Crohn’s disease and ulcerative colitis are diseases whose victims battle on a daily basis, often affecting every aspect of their lives.
For me, it took years to achieve a diagnosis and it came as an incidental finding, but not for lack of pursuing medical treatment during those long, painful years. I pushed myself through college and work, struggling all the while, and the diagnosis was almost a welcome relief. Finally there was a name to all the pain and suffering I’d endured, and we could begin treating it. Little did I know, that was just the beginning.
IBD is too often referred to as a “bathroom disease” implying that frequent bathroom trips is really what it’s all about. While that certainly is a huge, debilitating and limiting aspect of these illnesses, it certainly isn’t the only symptom we experience. Imagine living most of your life with the stomach flu: diarrhea, vomiting, fatigue, headache, malnutrition (insert symptom here). You wouldn’t be able to work, attend school or carry on most daily activities that a person needs to participate in. Those symptoms can be merely the tip of the proverbial iceberg and often lead to other even more serious situations. Something as seemingly simple as grocery shopping can often be a monumental task for someone battling IBD.
Even though I’m a veteran IBD’er, I became enlightened to new symptoms and side effects just this past year. Painful mouth sores can occur as a result of different medications or simply an aspect of the diseases themselves. Often, folks with IBD have a suppressed immune system opening the door to all sorts of opportunistic (and unwanted!!) infections and symptoms. Fistulas are a painful and sometimes dangerous risk and so are intestinal strictures and blockages. When I was 34 weeks pregnant with my son, I found myself in sudden intense pain from a perforation in my intestines necessitating urgent hospitalization emergent surgery to remove a portion of my intestines…while still carrying my son. The risk to us both was incredibly high and he was born, premature, a week later. By the grace of God, we survived and did it well.
IBD is an invisible disease. One may look perfectly healthy to the causal observer. But that’s a completely unfair and typically inaccurate judgment. Many people assume a person afflicted with IBD should be grossly thin and sometimes we are. However, medications and other factors often cause the opposite effect and an IBD patient can be of average weight or even have some extra pounds. Ask anyone of us who has ever taken prednisone how we feel about that drug. It can be your best frenemy.
IBD can run in families as well. Two decades after my symptoms surfaced, my then 11-year-old nephew started experiencing the same ones and was eventually diagnosed with Crohn’s as well. I know of much younger children and much older adults who are fighting this fight, male and female. IBD does not discriminate.
IBD is an immensely expensive illness for the patient and their care is often limited by their insurance or personal finances.
Medications are exorbitant as is treatment and many IBD patients have repeat ER visits and hospitalizations on a regular basis. Even routine colonoscopies are several thousand dollars and these sometimes need to be repeated yearly or even more often. If a patient has no insurance or inadequate insurance, this can prevent them from receiving necessary treatment and medications. Humira, a newer and popular treatment used for IBD, is a medication that is injected on a weekly, biweekly or monthly basis (depending upon the individual’s needs). Each pen (one injection) can cost upwards of $1,500 and most patients use at least two or more pens per month. AbbVie generously offers programs to patients and can sometimes reduce this cost to as little as $5 per month.
I am one face of IBD. Here is another precious one. This is Amy.. She has UC (ulcerative colitis) She has “no colon and is still rollin’!” (her words). Amy was hospitalized seven times in 2012 alone and underwent a colectomy in September 2012. Earlier this year, she had a J-pouch (an internal reservoir created in the absence of portions of intestines). Unfortunately, Amy also suffers from spondylitis and asthma and hopes (like we all do), that she won’t be diagnosed with anything else. This is more than enough already.
Amy: Fighting and still smiling! Attitude can make a difference!
IBD is so much more than what happens in the bathroom. It can limit one’s ability to be available to his or her family, participate in activities they enjoy, especially family activities, and maintain employment. Sometimes we are sidelined by our symptoms.
This is Amber. She was diagnosed with Crohn’s disease three years ago and since then has experienced many hospitalizations. Last year, she had part of her intestines removed and a few months ago, she went into liver failure due to a side effect of one of the medications she was prescribed to treat Crohn’s.
Amber: Warrior, fighter, survivor!
These brave faces represent warriors. The represent marriages, children, families, and circumstances that we can only really imagine. There are stories and lives behind these faces. There are dreams yet to be fulfilled and stories of amazing bravery. Take some time to educate yourself about this illness, especially if you know or love someone with it. Gain knowledge and compassion and help us raise awareness. And please, pray for a cure!
