8 years, 4 hospitalizations, 7 colonoscopies, 10+ different medications, 2 surgeries, one ileostomy, countless missed life opportunities, one journey with crohns disease.
Yesterday marked the start of crohn’s and colitis awareness week. This first week of December is designed as a time where the thousands of people living with these incurable illnesses are able to come together to raise awareness for bowel diseases. This week is super important to me, although I try to spread awareness all year round, because I know how important it is to get people talking about these often unheard of illnesses. I have had crohn’s disease for 8 years and I know how hard it can be to debunk the myth that Irritable Bowel Diseases (IBD) are just a “stomach ache”, a “choice”, or simply an un-talked about “poo-disease”.
To me and the other thousands of people living with IBD it is so much more than that. Crohn’s disease does not have a cure. Although it can be managed and put into remission with medication and surgery, it will be a lifelong struggle for someone, like me, diagnosed with it. One of the most frustrating things about living with a bowel disease is that they are invisible diseases. When people find out I am suffering from a chronic disease they often have a hard time grasping the severity of what I have been through because of my outer appearance. On any given day, you could look at me and see nothing wrong with me, where on the inside I am struggling from numerous debilitating symptoms. This invisibility to my sickness can cause problems when it comes to people’s views and legitimacy of crohn’s and other bowel diseases. Its hard to understand or relate to how sick someone really is when you look at them and from the outside they look perfectly normal. This begs the question, if you look fine from the outside, are you really that sick? I have dealt with this problem for years in my social life, my emotional life, my work life, and my school life just to name a few. Just because you cant see the problem doesn’t mean it doesn’t exist. This invisibility is a double-edged sword. It allows me to live a semi-normal life where my disease isn’t center stage, which is a blessing. It allows me a sense of discretion about my symptoms and the severity of my disease, but this invisibility also impacts the awareness or understanding of IBD. This week is a perfect opportunity to raise awareness for bowel diseases and to explain what someone living with one may encounter on a day-to-day basis. Crohn’s disease can affect so many other areas than just your entire digestive tract. I have suffered with eye problems, arthritis at the age of 19, dental issues, and fatigue so extreme its nearly impossible to get out of bed in the morning, and skin issues, just to name a few. Although someone with an IBD may be able to put on a brave face, please never doubt that they are probably struggling tremendously on the inside.
Going back to high school I remember a time where my symptoms were so extreme, so painful, so horrendous, I thought I was dying. I was young, I was scared, and I was reluctant to seek help. This was partially my own insecurity, but I also attribute it to the fact that back then no one around me talked about IBD. No one. Over the years I have seen improvements in this, with commercials and celebrities coming out of the woodwork to talk about their experiences with IBD. No one should have to go through what I went through. My world changed with my diagnosis in 2008. I had never known anyone with crohn’s disease and I felt like I was alone in this new “adventure” before me. It was a game I had no interest in playing. Being diagnosed with a chronic illness young, as I was, is a very hard thing for someone to wrap their head around. When you are 18 it’s hard to imagine living with pain and struggle for the rest of your life, but when your suffering its hard to imagine a time where it will be under control. It is because of this I care so deeply about spreading awareness about my disease.
For those who are blissfully unaware of what crohn’s disease is, (as I was prior to being diagnosed), it is a inflammatory condition that can affect the entire GI tract, from the mouth, all the way to the anus. Crohn’s is not to be confused with colitis, which is a similar in symptoms bowel disease that only affects the colon. Crohns most commonly affects the small intestine, or ilium, which is where the small intestine meets the colon. According to the Crohns and Colitis Foundation of America, crohns is also different from colitis in that it can affect the entire thickness of the intestines, where colitis involves only the innermost lining. Both crohns and colitis are irritable bowel diseases and both are chronic. According to CCFA, up to 800,000 Americans, both men and women of all colors alike, are affected by crohns disease. I would say it’s a safe bet to say that every person reading this knows someone else living with IBD. Awareness for crohns is so important because there is no cure. In fact, they don’t even know what causes it. There is always countless research and discussions about what causes crohns disease, but as of now there is no answer. What they do know is that crohns may have hereditary, environmental and genetic factors. In someone with crohns, the persons white blood cells mistake the digestive tract as an intruder, and essentially attacks it, causing inflammation which leads to the bouts of symptoms someone with iBD faces.
I have, not by choice, learned so much about crohns disease over the past 8 years. I have been forced to learn things I never imagined would affect me. My mission now is to pass some of that wisdom on to all of you because we all know someone with IBD, and it may help you better understand them. I encourage all of you to look at the CCFA website and see what you can learn and how you too can help break the stigma of those of us with an irritable bowel disease.