SABRINA'S STORY

Note: Sabrina’s last name has been changed to protect her identity

 

Sabrina Jones is a typical tween who enjoys time with friends and explores a variety of activities that bring a smile to her face.

 

She loves the trampoline, riding her bike, swimming and learning how to use a canoe and kayak.

 

She likes watching TV and movies with her siblings and family members, playing board games, drawing and coloring pictures.

 

And, as many girls her age do, Sabrina has an interest in fashion and hair. She won’t turn down an invitation to go shopping to browse for clothes and is known for sampling a variety of outfits from her closet.

 

But growing up, one thing set her apart from others her age. She suffered from a lifetime of colon issues related to a genetic disorder.

 

The problems increased around age 9 at which time she began having to go to the hospital about every 10 days for a year straight.

 

“Sabrina is the bravest person we know,” the Joneses said. “She’s had a lifetime of doctors poking and testing her and she lets them do what is needed with little complaint.”

 

By age 10, it was recommended she have an ileostomy. An ileostomy is the end result of a surgical process that diverts the normal path for waste to exit the body via a new opening using the lowest part of the small intestine, called the ileum.

 

After surgery and several weeks in the hospital, followed by continued recovery at home, Sabrina prepared to return to school to be reunited with friends and get back into a regular routine.

 

Her family said they met with school staff to explain a bag change and arranged for extra ostomy supplies to be kept at the nurse’s office, as well as with Sabrina, should she need them during the school day.

 

Unfortunately, Sabrina’s return to school didn’t go as smoothly as she and her family hoped, according to the Joneses.

 

The family said one of the first challenges Sabrina faced was being advised by school officials to wear clothing that completely covered her ostomy bag for “sanitary” reasons.

 

As a new ostomate, Sabrina did not fully tuck her pouch into her clothes, so a little bit of the sealed ostomy bag showed under the bottom hem of her shirts, her family said.

 

On several occasions, Sabrina left school crying and wearing a different shirt than the one she had worn to school, according to the Joneses.

 

Shortly after the clothing issue was addressed, the Jones family said Sabrina was requested to follow a school-presented plan outlining how she should prepare for and empty her bag while under observation at the nurse’s office, rather than using a student bathroom, every two to three hours.

 

The plan described the supplies Sabrina should lay out – among them, Clorox wipes, a cup with water, a toothbrush, a fingernail brush – before emptying a bag. It also laid out the process for her to follow to empty a bag, according to the Joneses.

 

The family said they were distraught such a procedure was put in place and that Sabrina had to be observed to empty her pouch.

 

On top of these issues, the Joneses said Sabrina was timed to be sure she thoroughly washed her hands after emptying her bag.

 

The Joneses said they raised concerns about each of these issues with school officials and sought support from Sabrina’s doctors, who communicated with school officials.

 

Eventually, Sabrina was permitted to use a student bathroom, but again with observation and on a schedule. The use of a timer was removed. Instead, Sabrina was encouraged to sing the “ABC” song, the Joneses said.

 

The ongoing situation at school affected Sabrina in many ways, most profoundly her mental health. Several months after returning to school, Sabrina expressed dissatisfaction with her life and talked about ending her life.

 

Her family immediately pulled her from school and found outpatient services to help her.

 

The Joneses said they feel Sabrina’s rights were violated and that there must be a means to ensure Sabrina and other youth who are in similar situations return to a school environment post-surgery feeling safe and confident. ­​

Sabrina embodies all the reasons why it is important for the Foundation to continue and expand its vision that it must, for Sabrina and so many others:

 

  • provide support that fosters healing and hope to and for ostomates, their families and caregivers.  

  • equip individuals with the tools they need to work through pre-op and post-op emotional, physical and social challenges. 

  • educate ostomates, their families and communities through support networks, speaking engagements, social media, community programs as well as additional programs. 

  • advocate for and support legislation that protects and increases patient rights and furthers patient benefits and resources. 

  • strive to eliminate misconceptions and stereotypes related to having an ostomy. 

  • encourage an ostomate’s positive sense of self and personal empowerment.  

  • believe in building and strengthening relationships among those in the ostomy community to advance communication and knowledge sharing. 

  • champion every ostomate along the journey to be their best self.