Father Confronts Challenges After Bladder Surgery in Bold Documentary

A 38-year-old father, Keen, recently embarked on a transformative journey after undergoing bladder removal surgery on September 12, 2023. The procedure was intended to alleviate years of severe pain and restore a sense of normalcy to his life. However, it left him grappling with self-esteem issues due to the creation of a stoma, an opening in his abdomen that connects his intestine to an external bag.

Reflecting on his post-surgery experience, Keen said, “You look into the mirror and just feel like, ‘what is that on me?’ It’s disgusting. It’s gross.” These feelings of discomfort prompted him to take a significant step towards self-acceptance by walking shirtless along the Cashel Street tram tracks for a documentary about his health journey. He expressed a desire to inspire others with similar experiences, stating, “I want to show people with stomas that you shouldn’t be ashamed of who you are. Don’t be ashamed just because you’ve got a bag attached to you.”

The documentary, directed by Richard Lewis of Christchurch-based Yeah’Nah Content, is set to be available on their Facebook page in the coming weeks. Keen, typically a part-time cameraman focusing on unique stories, became the subject of this project to share his own narrative.

Keen was diagnosed with Noonan syndrome, a genetic disorder affecting approximately 1 in 1,000 to 2,500 births. This condition can result in various challenges, including learning difficulties and physical manifestations such as a protruding chest. Keen’s experience is a testament to the complexities associated with this syndrome, which also contributed to his bladder failure.

During his walk on Cashel Street, although he noticed a few curious glances, he maintained a sense of pride. “I had my head up high and just walked straight through,” he recounted. “I was scared because I didn’t know what the reaction might be, but when I did it, it actually felt so good.” Keen hopes to promote awareness and positivity for individuals living with stomas, as he continues to build his self-confidence.

In an effort to connect with others facing similar challenges, Keen has launched a Facebook page called Bladder Warrior. This platform is dedicated to raising awareness and offering support for those living with a stoma or Noonan syndrome. He emphasized, “We’re amazing people, and we shouldn’t have to feel like we’re going to be discriminated in any way, shape or form.”

Before his surgery, Keen faced significant health challenges. He had tried numerous medications to alleviate his bladder pain but eventually had to leave his job as a kitchen hand at the Novotel Hotel due to the worsening condition. “Nothing was helping with my bladder. Things were getting worse. I was in a constant pain wave,” he described, recalling the relentless discomfort he endured.

As a father of two young adult daughters, Keen’s health struggles have impacted his parenting. However, he takes pride in his journey, stating, “They’ve said they are really proud of where I’m at now.” His experiences with Noonan syndrome also included living with pectus carinatum, a condition that caused his chest to protrude. Growing up, this led to feelings of self-consciousness, particularly during swimming activities at school.

Keen’s journey included a significant milestone in his mid-20s when he became the first person in New Zealand to undergo a specialized chest reconstruction. Despite the challenges associated with accessing such surgery in New Zealand, he reached out to an American surgeon online. The cost and logistics of the surgery initially appeared daunting, but his determination led him to the United States for the procedure.

Upon waking from the operation and seeing his reconstructed chest, Keen experienced a wave of emotion, exclaiming, “I’m a real boy,” as tears filled his eyes. Now, as he continues his recovery from the recent operation, Keen is eager to return to work and leverage social media to create connections, support individuals with stomas, and share his experiences.

“Everything I’m doing now, it’s all based on education and supporting those who either have a stoma or an invisible disability,” he concluded. Through his efforts, Keen aims to empower others while navigating his own path to self-acceptance and confidence.