Voices of Crohn’s Disease

Voices of Crohn's Disease

Around the World With Crohn’s: Erron Maxey’s Journey

Erron Maxey, a former professional basketball player, experienced the onset of Crohn’s disease in 2009 while playing abroad. It all began with a bout of food poisoning in Argentina, which seemed to trigger the condition. Although the entire team had food poisoning, Maxey’s symptoms persisted and worsened over time[^1].

After a series of surgeries and multiple years, Maxey was finally diagnosed with Crohn’s disease. During those challenging times, he experienced upset stomach, chronic diarrhea, and constant pain[^1]. The symptoms affected his energy levels and his ability to perform on the court. He recalls candidly informing his coaching staff about his condition, admitting that he simply didn’t have it on certain days[^1]. As a world traveler, Maxey faced difficulties in obtaining proper treatment while on the road. Obtaining medication in different countries proved to be a complex task due to various laws and regulations[^1].

Maxey’s experiences have taught him the importance of being clear with loved ones about his needs. He emphasizes the necessity of open communication, even if it means discussing graphic and challenging aspects of the disease[^1]. Despite the hardships, Maxey maintains a positive outlook and believes that he will navigate through the challenges. His resilience is apparent as he approaches his condition with both nervousness and determination. He understands that while Crohn’s disease can be life-altering, he is ready to face whatever comes his way[^1].

Life Beyond Crohn’s: Natalie Hayden’s Triumph

Natalie Hayden received her Crohn’s disease diagnosis in 2005, shortly after completing her undergraduate degree. Until that point, Hayden had been the picture of health[^2]. However, her symptoms quickly manifested as excruciating abdominal pain, accompanied by a drastic weight loss due to her inability to eat without severe discomfort[^2].

The road to diagnosis wasn’t an easy one for Hayden. She vividly recalls the difficulty she experienced before receiving proper medical attention. It was her mother, a nurse, who ultimately rushed her to the hospital, where a physical exam and CT scan confirmed her condition[^2].

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The initial shock of the diagnosis was overwhelming for Hayden. She believes that the most challenging aspect of the disease is the impact it has on one’s identity. Hayden describes it as a scarlet letter, forever altering how she sees herself[^2]. However, despite the challenges, Hayden has built a fulfilling life as a journalist, blogger, and mother of two. Her journey serves as a testament to the fact that having Crohn’s disease doesn’t prevent one from pursuing their dreams or finding love[^2].

While Hayden has experienced remission since her surgery in 2015, she acknowledges that there are still bad days. She advises against trying to be a superhero and encourages others to seek help as soon as symptoms arise, to prevent hospitalizations[^2]. Hayden also brings attention to the loneliness that can accompany Crohn’s disease. Even with a supportive network of friends and family, it can be challenging for others to fully grasp the impact the condition has on one’s life. She highlights the significance of online communities, which offer connection and understanding to those who may feel isolated[^2].

‘An Invisible Disease’: Vern Laine’s Journey

Vern Laine’s journey with Crohn’s disease began unexpectedly in 1988 when he started experiencing intense stomach pain[^3]. For months, doctors dismissed his symptoms as mere discomfort, suggesting it was “just gas” or imagining it[^3]. Finally, after an extended period of uncertainty, he received the official diagnosis: Crohn’s disease. However, he was disheartened to learn that no cure existed for his condition[^3].

One of the most challenging aspects of Crohn’s disease, according to Laine, is dealing with the uncertainty it brings. The unpredictable nature of the illness significantly impacts relationships, as plans can always be disrupted by sudden flare-ups[^3].

Another difficulty Laine encounters stems from the invisible nature of the disease. Despite experiencing numerous surgeries and having an ostomy, people often remark that he doesn’t look sick. This lack of understanding takes a toll on him psychologically, and he wishes more attention would be given to the mental stress associated with a bowel disease[^3].

To cope with the challenges, Laine emphasizes the importance of emotional support, whether from loved ones, group therapy, or counseling. Additionally, he has found solace in painting. Through art, he finds relief from pain and depression. Painting allows him to express his emotions and momentarily escape the hardships of his condition[^3].

No Regrets: Stephanie Hughes’ Decision

Stephanie Hughes was diagnosed with Crohn’s disease at the age of 13. Despite the difficulties she has faced, Hughes maintains a lighthearted perspective, evident from her blog’s name, “The Stolen Colon.” However, living with the disease has presented its fair share of challenges[^4].

One of the defining moments for Hughes came in 2012 when she made the decision to have surgery for a permanent ostomy, a procedure where waste is redirected into a pouch outside the body. At the time, she was extremely sick and frequently hospitalized. Despite fears and apprehensions, she made the life-altering choice, realizing that it would greatly improve her quality of life[^4].

Contrary to her initial beliefs, Hughes discovered that living with an ostomy did not mean giving up anything. On the contrary, it provided her with a sense of freedom and allowed her to prioritize what truly mattered[^4]. She encourages others considering the surgery to consult their doctors and seek advice from individuals who have undergone the procedure, as it reshaped her life positively[^4].

Hughes acknowledges that Crohn’s disease alters one’s life, often presenting significant challenges. However, she believes that these hardships allow individuals to appreciate the good and beautiful aspects of life even more. Though it can be daunting, she views it as an opportunity to cherish what truly matters and not let trivial matters distract from life’s most meaningful aspects[^4].

Conclusion

Through the stories of Erron Maxey, Natalie Hayden, Vern Laine, and Stephanie Hughes, it becomes clear that living with Crohn’s disease presents unique challenges. However, these individuals demonstrate extraordinary resilience and determination in the face of adversity.

Erron Maxey’s experiences serve as a lesson in open communication and the importance of being transparent with loved ones about the realities of the disease. Natalie Hayden’s journey highlights the need for support systems and the value of online communities for combating the isolation that can accompany Crohn’s disease. Vern Laine’s story emphasizes the importance of acknowledging and addressing the emotional toll chronic illnesses can take. Finally, Stephanie Hughes’ decision to have an ostomy presents a powerful tale of embracing change and finding a better quality of life.

These individuals show that while Crohn’s disease may bring its share of hardships, it does not define their entire lives. They continue to pursue their passions, build families, and find joy in the midst of their circumstances. Their stories offer hope and inspiration to others facing similar challenges. Crohn’s disease may reshape their lives, but it does not diminish their strength and resilience.