For personal and legal reasons, the subject of this interview will be referred to as Chad C.
Chad is a seventeen-year-old resident of Chapel Hill. He is currently a senior in high school and is an avid gamer and technology lover who is interested in physics and mathematics. One thing that sets Chad apart from his peers is that for over a decade, he has been living with Crohn’s disease. With this interview, I set out to answer the question of what factors are most impactful on the lives of younger patients who have been diagnosed with Crohn’s and to ask this interviewee what solutions have been most effective in his life over time.
Scientifically, Crohn’s disease is a type of bowel disease that causes inflammation and ulcers along the digestive tract. An easier way to think of IBDs is with the statement “Crohn’s disease and ulcerative colitis are the two main components of inflammatory bowel disease” (Baumgart, 19). To be more specific, ulcerative colitis is when the inflammation occurs in the large intestines and Crohn’s is when this inflammation occurs anywhere else in the digestive system (Coleman, Interview). In Chad’s case, he experiences inflammation in his small intestines, which is one of the more common areas to be affected. Crohn’s is not an autoimmune disorder because the body is not attacking itself, but more so attacking the bacteria of the stomach. Because scientists have identified the cause of this inflammation, it does not have a cure and is considered to be a chronic disease.
I began my interview by asking Chad about the negative experiences he has had since his diagnosis. Surprisingly, he shared with me that he has not had as negative of an experience as some would expect to have with a chronic disease. He even mentioned that growing up, he “loved being the center of attention” whenever he was in school due to all the questions he would receive about his condition and has had multiple experiences where having Crohn’s wasn’t seen as something to be looked down upon.
I was surprised by this because I had assumed that there was generally a negative stigma related to irritable bowel diseases, but in Chad’s case, he would go as far as to say that he doesn’t necessarily believe there is a stigma, but rather certain factors that individuals may deal with to treat their conditions that could lead people with no knowledge of the disease to be confused or not understand the magnitude of the condition. For example, people with Crohn’s disease tend to have weight issues depending on the types of treatment they take, and this can lead to some embarrassment because individuals can be “too skinny” or “too large” as Chad puts it. In his individual experience, he dealt with both sides of the weight spectrum as he tried various treatments. Overall, Chad shared that he doesn’t necessarily think much about having Crohn’s disease and is even able to find humor in his condition. He expresses this humor through storytelling, and basically simplifying his experience to better explain what he lives through.
Chad was diagnosed when he was in elementary school, around the age of eight. He later realized that he likely had Crohn’s since he was in kindergarten. This is because when he was around five, it was not uncommon for him to experience long term sickness, but after some time his symptoms disappeared for about two years. Symptoms of Crohn’s tend to include “abdominal pain, fever, and clinical signs of bowel obstruction or diarrhea” (Baumgart, 20). When the symptoms returned, he went to a doctor and was fully diagnosed. He was prompted to seek help for his condition due to experiencing body pains, lethargy, weight loss, and difficulty eating. Since he was so young, I wondered how he must have felt when he received this diagnosis, and he said that he didn’t fully understand the issue and even thought it was “normal”. Chad specifically remembers following along with the plans his parents and doctors made for him and recalls different events in phases based on the video games he was playing at the time. He made sure to mention Monkey Quest and Poptropica, two games that he feels helped him through this period. Around this time, the newest experience Chad had was the use of a feeding tube. He recalled that after his diagnosis, a gastrointestinal doctor advised the use of the tube to ensure he was receiving enough nutrients. When he began this treatment, he told me that walking around the hospital in his gown with the tube was strange but would ultimately become a normal occurrence in his life. He was also annoyed that he couldn’t play sports or eat whatever he wanted – specifically popcorn, which he happened to be eating during our interview. While he couldn’t play sports, he made sure to inform me that he often got out of gym class and could use his condition as an excuse – which he hinted was not something he was proud of. Another factor that has aided Chad’s experience is access to a camp (one similar to Camp Oasis and Camp Go Beyond) where he was surrounded by a community of other children who had Crohn’s or ulcerative colitis. In so many words, Chad shared that having these opportunities and being surrounded by others who shared his condition has impacted his views on his experiences and allowed him to not experience much judgement.
The causes of Crohn’s are widely disputed. Generally speaking, it is a genetic condition that is more likely to occur in an individual if a member of their family has been diagnosed. When it comes to genetics, scientists have found that “[the] incidence and prevalence are rising in all ethnic groups and because of the systemic nature of the illness, Crohn’s disease concerns an increasingly diverse group of clinicians” (Baumgart, 19). Chad – who happens to be Jewish – also mentioned to me that certain ethnic groups are more likely to experience Crohn’s, which is a common occurrence with many diseases. When it comes to the Jewish culture specifically, some doctors would go as far as to say that Crohn’s is two to four times more likely in people with Ashkenazi ancestry (Kenny et al, 2). Some studies have even reported even more inflated numbers.
On the topic of treatment, Crohn’s has many different types of treatments, and there are several options for those struggling with the disease to choose from depending on their needs and preferences. Chad was extremely passionate when explaining the different types of medications available and as he puts it, the main takeaway is that the top categories are “biologics” and “other”. Biologic medications are “almost better in every way” (Coleman, 2022) and are mostly the ones that have aided his experiences. While biologic medications tend to be more effective, Chad made it clear that most medications lose effectiveness over time, but with chronic diseases you don’t want biologic medications to stop working to the point where no other treatment will be effective. Over time, better biologics have come out to resolve this issue, and they tend to last for longer durations of time.
One medication that Chad had strong opinions about was Methotrexate. It can be taken in the form of shots or pills, but several treatments for Crohn’s also come in IV form. He absolutely hated this treatment and claimed that it essentially did nothing. Chad considers Methotrexate to be a medication that does more harm than good, as it is known to cause intense nausea and in Chad’s words: “poisons the immune system so that it doesn’t attack your other systems” (Coleman, 2022). Chad started Methotrexate when he was a younger child, and while taking this treatment it made most foods and beverages untouchable. The dosage also included 10 pills at a time, which was extremely uncomfortable for him. This treatment caused visceral reactions, and now he gets nauseous around various items such as saran wrap, peppermint medicine and numbing medicines because he associates these things with his time using Methotrexate. Another biologic medication is called Antivio, which essentially weakens the immune system specifically to target the intestines so that there is no increased risk of infection anywhere else. Some of the more common and infomercial worthy treatments include Stelara and Humira, which Chad has never personally used.
Chad also mentioned “Crohn’s diets” which are the same as any other diet but just marketed towards a certain audience. He never went on a Crohn’s diet himself because of his personal treatment plan but shared with me that they tend to encourage cutting down on gluten, dairy, sugar and fats. This point of the interview was when Chad mentioned to me that “Crohn’s is unique because many symptoms and conditions can just be diagnosed as Crohn’s” without doctors knowing if one’s health is specifically being affected by this disease or not due to how common the symptoms can be.
When asked about symptoms, Chad told me that to date he doesn’t experience any due to entering remission following the use of the nasogastric tube, and because of this, he has not had any serious issues – such as pains and gastrointestinal irritation – from Crohn’s since he was in elementary school. He shared with me that he does not fear a flare up will occur because his remission from the nasogastric tube has been successful, and he does not have any anxieties in his day-to-day life in relation to Crohn’s.
In Chad’s case, he began his treatments with a nasogastric tube that is put in through the nose and extends to the stomach to deliver a soy milk-like substance into the body. This substance is meant to act as a primary form of caloric intake until the body goes into remission. He was periodically using this tube until about a month ago and believes that this was the main form of treatment that aided his recovery and prevented the more negative symptoms of Crohn’s.
When asked about factors that have significantly benefitted his life in relation to others who may suffer from Crohn’s disease, Chad made it clear that his strong support system and location were some of the most helpful factors in his life. For instance, living in Chapel Hill and having access to the UNC Hospital – one of the best in the nation – was extremely convenient. When it comes to his immediate family, his father is an infectious disease doctor, and while people in this specialty do not focus on chronic diseases, “all doctors have some level of training in multiple areas” so he was still able to contribute and make the experience better for his son (Coleman, 2022). The presence of these factors so close to his daily life have heavily improved Chad’s experiences, and he realizes how lucky he is to have such easy access to these resources.
From my interview with Chad, I was able to learn that when someone has been diagnosed with a chronic disease, it is not a guarantee that their life and medical experiences are all that their life revolves around. Overall, Chad seems to be a happy individual, and I would attribute his strong support system and convenient access to healthcare to be the major causes of his positive experiences. While Crohn’s does not have a cure, there are treatments that seem to have better rates of pushing the body into remission, and there are ways to make life with Crohn’s and other chronic diseases more tolerable.
Works Cited
Baumgart, Daniel et al. “Crohn’s disease.” ScienceDirect, The Lancet, 19 Jan. 2013, https://www.sciencedirect.com/science/article/pii/S0140673612600269
C., Chad. Interview. Conducted by Alyssa Wilson, 8 April 2022.
Kenny, Eimar et al. “A Genome Wide Scan of Ashkenazi Jewish Crohn’s Disease Suggests Novel Susceptibility Loci.” PLoS Genetics, March 2012, https://doi.org/10.1371/journal.pgen.1002559.
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