Key Concepts
- Ulcerative Colitis: An autoimmune disease and a form of Inflammatory Bowel Disease (IBD) where the immune system attacks the large intestine.
- Inflammatory Bowel Disease (IBD): A group of inflammatory conditions of the digestive tract.
- Ostomy: A surgical procedure that creates an opening (stoma) in the abdomen to allow waste to exit the body.
- Ileostomy: A type of ostomy where the end of the small intestine is brought through the stoma.
- Ileostomy Bag: A pouch worn over the stoma to collect waste.
- J Pouch: A surgically created internal reservoir from the small intestine, designed to function like a colon and rectum, allowing for bowel movements without an external ostomy.
- Stoma Reversal: A surgical procedure to close a stoma and reconnect the digestive tract.
- Autoimmune Medication: Drugs that suppress the immune system, often used to treat autoimmune diseases.
Personal Health Journey and Ulcerative Colitis Diagnosis
The speaker recounts a personal history of body image issues, starting with feeling too short at age eight, which led to pursuing martial arts and weightlifting to build strength and confidence. For years, the speaker believed a healthy lifestyle of exercise and diet would guarantee good health. However, this belief was shattered in November 2018 with a diagnosis of ulcerative colitis, an autoimmune disease and a form of Inflammatory Bowel Disease (IBD).
Symptoms and Progression of Ulcerative Colitis
Ulcerative colitis is characterized by the immune system attacking the large intestine. The speaker experienced severe symptoms including:
- Bloody diarrhea
- Stabbing stomach pains
- Immediate urgency to use the bathroom
- Loss of appetite
- Significant weight loss
Initially, at age 22, doctors assured the speaker they looked healthy and did not require surgery. However, by May 2019, the inflammation in the colon had become so severe that the speaker was experiencing up to 24 bowel movements daily. This led to a drastic physical decline, with weight dropping from 145 lbs to 101 lbs. The disease caused significant physical and mental deterioration, impacting daily life, causing clothes to no longer fit, and leading to hair thinning and loss. The speaker describes feeling like a "shriveled up 23-year-old man who in less than a year had become nothing but skin and bone."
Surgical Intervention and the Introduction of Ostomy
In September, after a difficult summer, the speaker's doctor recommended emergency surgery to remove the colon and live with an ileostomy. An ileostomy involves bringing the end of the small bowel through an opening in the abdomen called a stoma, to which an ileostomy bag is attached to collect stool.
Emotional Impact and Alternative Options
The prospect of living with an ileostomy was devastating, leading to tears and fears of social stigma and an inability to form romantic relationships. The only other medical option presented was autoimmune medication that would severely weaken the immune system, with a warning that some patients did not survive this route.
A third option, a J pouch, was then presented by the surgeon. This procedure involves shaping the small intestine into a "J" to allow for bowel movements without an external ostomy. The J pouch surgery was a three-part process:
- Colon removal and temporary ileostomy.
- J pouch surgery after three months, continuing with the temporary ileostomy until healing.
- Stoma reversal after another three months.
The day before the colon removal, the speaker felt anger and distress, questioning the cause of the illness. A resident's statement, "We're here to save lives, not colons," offered a stark reminder of the medical necessity.
The Role of Andrew, the Ostomy Nurse
The speaker's perspective began to shift with the arrival of Andrew, an ostomy nurse. Andrew's positive demeanor and encouraging approach were instrumental. He shared stories of previous patients who had undergone ostomy surgery and experienced significant improvements in their health and quality of life. Andrew reassured the speaker that weight gain and a return to a normal life were possible.
Andrew provided step-by-step guidance on managing the ileostomy, including how to change the bag, fostering confidence and competence. He viewed ostomies with remarkable positivity, even referring to the speaker's bag as a "Gucci bag" and suggesting patients name their ostomies. The speaker named their ostomy "Alejandro."
Andrew's parting words before the speaker's hospital discharge were impactful: "I love osttomies. I want patients to master them so they can live their lives again." This statement profoundly changed the speaker's perspective, fostering pride in living with an ostomy and a renewed zest for life. Inspired, the speaker attended a party that weekend, feeling more confident than ever.
Recovery and Renewed Life
Over the next two months, the speaker regained weight, expanded their diet, and resumed working out. The speaker no longer felt self-conscious about their body, attributing this freedom to the ostomy. This period fostered a sense of gratitude and confidence, leading to an appreciation for life's small joys, thanks to Andrew and Alejandro.
Tragic Loss and Continued Challenges
In November 2019, during a follow-up appointment to discuss the J pouch surgery, the speaker learned of Andrew's unexpected death from a medical condition at the age of 27. This news was a profound shock, bringing feelings of loss and regret that Andrew would not witness the speaker's continued recovery and newfound confidence.
Following the subsequent surgeries and stoma reversal, the speaker experienced numerous complications, including frequent vomiting, kidney stones, urgency, loss of appetite, and weight loss, making life unbearable again.
Seeking New Solutions and Redoing Surgeries
This led to a decision to research a new doctor specializing in revising J pouches. The speaker found a surgeon at NYU Langone who recommended redoing all previous surgeries, including a temporary return to living with an ileostomy. This time, however, the prospect of having an ileostomy again was met with excitement due to Andrew's positive influence. The NYU team and the surgeon provided compassionate care and support throughout the next two years as the speaker underwent these repeat surgeries.
Remission and Advocacy
On March 29, 2022, after four years of challenges, the speaker finally closed that chapter and opened a new one, living life to the fullest on a biological drug in remission.
Andrew's death became a catalyst for the speaker to spread awareness about IBD. His legacy inspires the speaker and others to prioritize health and adopt the positive perspective on life that he taught. The speaker concludes with a message of self-acceptance, encouraging others to embrace their bodies, including ostomies, scars, and all. The speaker reiterates the importance of doctors saving lives and expresses confidence in their ability to face future challenges, drawing strength from Andrew's teachings and the memory of living life with a "Gucci bag."
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