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The Blind Disease

The little things in life are what we so easily take for granted. Things like being able to enjoy a holiday dinner with your family, going out with friends, and even taking in a deep breath of fresh air. All of these and so much more were suddenly taken away from my dear finacé when he was just 18 years old.

Working towards his bachelor’s degree in aviation maintenance at the Southern University of Illinoi, things seemed to be going great for Ross. He had just lost fifty pounds and felt the healthiest he had ever been. Little did he know that in the middle of class one day, he would be interrupted with the beginning symptom that would completely alter his life forever. He had been feeling sick all morning, and thought maybe he caught the flu, however, when he noticed blood in his stool he quickly realized something was very wrong.

Ross was hospitalized for weeks before doctors could figure out what exactly was causing the seemingly unstoppable bleeding. I could only imagine what he must have been feeling, waiting for so long in tremendous pain and agony for answers. I specifically remember Ross telling me, “At one point I just wanted to give up. The pain was so unbearable – I had no hope for answers or relief and I literally wanted to just die. It is the worst pain I have ever experienced.” Those words still break my heart. After countless invasive testing, seven blood transfusions, and 30 more pounds shed, my fiancé was officially diagnosed with Crohn’s disease.

I think one of the best and definitions of Crohn’s disease was described in a Health Union article published by the Science Daily. The article reads, “Crohn’s disease in a chronic inflammatory disease of the digestive tract affecting about 780,000 people in the U.S. Typical symptoms include abdominal pain, diarrhea, weight loss, and fever. In addition, as an inflammatory disease, Crohn’s can have symptoms outside of the digestive tract affecting the joints, skin, eyes and liver” (Health Union 2016).

Ross has now been in remission for almost three years, but is still immensely affected on a daily basis. He is actively involved in a support group and also fights to bring more awareness to the disease, considering many people have little to no knowledge about Crohn’s. The scariest part about all of this for me is not only the pain he will undoubtedly have to endure in the future or the impact the disease leaves on him mentally and emotionally, but also the long-term, dangerous effects, and ultimately the higher risk of our time together being cut short due to the variety of complications associated with the disease. After my eyes were slightly opened to the horrors of Crohn’s disease, and experiencing the pain and hopelessness it makes me feel to watch the one person I love the most go through so much, I was immediately and overwhelmingly inspired to not only educate myself, but also others about the disease in hopes that one day there will be a cure.

The Health Union is a well-established organization in which conducts and revises studies that have to do with various diseases in the U.S. One of their most recent surveys, “Crohn’s Disease in America”, was taken online from October 29th, 2015 until January 10th, 2016, with 2,018 respondents who were diagnosed with Crohn’s disease and a resident of the U.S. or a U.S. citizen living abroad. The survey determined that 78% of respondents felt that the disease at least sometimes impacts their ability to work, and over half reported that it often or always negatively impacted their overall quality of life. One respondent by the name of Paul Richmon states,

“I wish more people would become more educated about Crohn’s disease. If everyone was more read about Crohn’s, they would understand how it affects people’s lives in every way. They would realize how many people are affected by it, and how hard it is to keep friendships and relationships because of the embarrassing impact it has on our daily lives and routines” (Health Union 2016).

This is one small example that clearly shows a side of frustration Crohn’s patients experience. One of the biggest aggravations they seem to convey are the ignorant comments of others. Due to Crohn’s disease being a so called “blind disease,” it can be easy for others to make incorrect assumptions regarding what someone with Crohn’s may be experiencing. For instance, while researching this disease I came across a support group on the website crohnsforum.com. Multiple women express their frustrations to one another, mainly concerning the ignorant comments and accusations of others who are uneducated about Crohn’s. The open support conversation begins with a text written by a woman under a username known as “DanceMom.” She states,

“My in-laws have never been very understanding when it comes to my children’s illnesses. They always try to minimize the situation and make [my husband] and I feel as if we are exaggerating and making things up. However, after hearing that [our son] does have Crohn’s, my mother in law has done her best to educate herself and support our decisions. My father in law hasn’t changed his ways, and today while we were visiting he made a really [ignorant] comment. He swears that he was diagnosed with UC [(ulcerative colitis)] in early adulthood (this could be true, I have no idea) but that it only flares when he is under extreme stress. He proceeds to tell us that everyone has IBD in one form or another in varying degrees. I just shook my head at his ignorance and chose not to comment. I’m sure that won’t be the last [ignorant] comment I hear from him and others” (Crohn’s Forum 2013).

Another lady under the username “Crohn’sForever” responds, sharing an experience she encountered when a nurse actually told her that she was lucky, and wished she could be hospitalized, too, so that she didn’t have to go to work. Many other women who were subscribed to the support group joined in on sharing their own personal stories as well. It is clear that most patients feel as though their disease is often taken too lightly and misunderstood.

The scariest thing about Crohn’s disease for most people is that there is no cure. Luckily, there are numerous amounts of treatments that act in controlling inflammation and other painful symptoms. However, along with having to be on medication for the rest of their lives, they must also work to control the disease with their diets. The CCFA (Crohn’s and Colitis Foundation of America), remaining at the forefront of research for Crohn’s and Ulcerative Colitis, fund cutting-edge studies at major medical institutions, nurture research investigators at the early stages of their careers, and finance underdeveloped areas research all in efforts to find a cure. In one of their brochures they state,

“Maintaining proper nutrition is important in the management of Crohn’s disease. Good nutrition is essential in any chronic disease, but especially Crohn’s. Abdominal pain and fever can cause loss of appetite and weight loss. Diarrhea and rectal bleeding can rob the body of fluids, minerals and electrolytes. These are nutrients in the body that must remain in proper balance for the body to function properly” (CCFA 2014).

With this, the authors are trying to convey the importance of maintaining a balanced diet despite being limited to what foods patients are able to eat. Although the number one trigger for a Crohn’s patient to come out of remission is stress, the second most common is the consumption of greasy foods, and raw fruits and vegetables. People who have been diagnosed with Crohn’s quickly find out that a lot of how they will determine what they can and cannot eat will take a good amount of trial and error. My fiancé, for example, can eat spicy foods and experience no complications, however many Crohn’s patients do experience symptoms when consuming them. He also cannot have beef, beans, nuts, and other fibrous foods. This is ultimately one of the aspects of the disease that many, including Ross, say affect them the most aside from the physical pain. Three years later, it is still disheartening to watch his friends and family consume some of his most favorite foods, while he cannot. Coming from a woman who has also just recently been diagnosed with an intestinal disease, avoiding certain foods are a lot harder than most people think, including myself about five months ago! All people have emotional ties to certain foods. Whether it’s the fluffy corn casserole your aunt makes for Thanksgiving every year, or those thick, juicy hamburgers that taste the best when your uncle grills them out on the fourth of July; things like this are part of what makes Crohn’s disease, to say the least, a pretty crummy thing to live with.

Although the CCFA is considered one of the leading promoters for Crohn’s disease awareness, some argue that they do little to educate the others. Each year, they establish a Crohn’s and Colitis awareness week in efforts to get the community involved. Throughout the week, they hold many fundraisers and activities in hopes to attract mainly the younger generation. In December of 2014 they held a videogame event and even promoted the chance to win an Apple Watch if you registered to participate in a 2015 walk for Crohn’s and colitis. I am pleased that there are efforts being made to bring awareness, however I along with other sources feel that the efforts of the CCFA do not come close to shedding light on the true severity of the disease. The awareness week is great for raising money towards finding a cure and getting the community involved, however at the best opportunity to bring education to people, little is done.
To further explain, after the CCFA published its “Escape The Stall” campaign, using an image of a public bathroom stall door as its front advertising theme, a thirty-year long sufferer of Crohn’s disease by the name of Michael A. Weiss decided to post about his anger and frustration towards the CCFA, speaking also for many others on their behalf. He states,
“The above picture is from the latest well-intended NEW Crohn’s Disease, Colitis and Inflammatory Bowel Disease (“IBD”) Mainstream Awareness Campaign from the Crohn’s & Colitis Foundation of America (the “CCFA”) which has me SO disappointed, annoyed, angry and insulted that I’m up at 4 AM on a Sunday morning when I should be resting getting ready for the New England Patriots-Baltimore Ravens AFC Championship Game, given that I am a life-long Pats fan and I just turned 50 last week”(Weiss 2013).
He goes on to explain,
“With this in mind and in my humble opinion, the CCFA has AGAIN failed MISERABLY in trying to help us Crohnies and IBDers by yet again putting the focus of their well-intended efforts on a BATHROOM STALL DOOR and using PITY to play directly into the public’s overall perception of the less serious stigmatizing aspects of these chronic, incurable, autoimmune and often VERY painful diseases which can, and do, DESTROY lives (and families) physically, mentally, psychologically, financially, professionally and socially” (Weiss 2013).

In conclusion, Crohn’s is still a greatly misunderstood disease. Many people are uneducated, leading them to make premature assumptions regarding those who are affected. 33,000 people are diagnosed with IBS (irritable bowel syndrome) each year, and there is still no cure. Due to the endless amount of possible intestinal complications, the diagnosing process tends to be a very long, painful and invasive one. My fiancé, being 21, has already had five colonoscopies and seven blood transfusions. Many others share stories like his, and hold the same desire to educate people with the facts about Crohn’s disease. You never know when someone you love could be affected by this disease. Education is power if we want to find a cure.

 

 

Citations:

  • Crohn’s and Colitis Foundation of America. (2014). Living with Crohn’s Disease [Brochure]. Retrieved June, 2016, from

http://www.ccfa.org/assets/pdfs/living-with-crohns-disease.pdf

 

  • Crohn’s Forum [Support Group]. (2013, April 21).

 

  • Health Union. “Crohn’s disease diagnosis difficult to obtain, life altering, new national study finds.” ScienceDaily. ScienceDaily, 1 March 2016.

www.sciencedaily.com/releases/2016/3/160301074252.htm.

IBD Awareness Week. (2014, December 1). Retrieved June 15, 2016, from http://www.ccfa.org/news/IBD-awareness-week-2014.html

Weiss, M. A. (2013, January 20). Pity Does Not Breed Crohn’s Disease, Colitis, or IBD Awareness. Retrieved June 15, 2016, from and http://hospitalpatient.com/crohns-disease/pity-does-not-breed-crohns-disease-colitis-or-ibd-global-awareness

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