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Where Everybody Understands You
41,452 members
Jul 08, 2016

My story

Living an active life after a total colectomy and permanent ostomy is a journey that many people navigate with resilience and positivity. This story is about someone who faced significant health challenges, including a diagnosis of colorectal cancer, and underwent surgery that resulted in a permanent stoma. Here are some key points and insights from their experience:

- The surgery, performed in April 2012, resulted in a permanent stoma. The surgeon, who was trained in Russia, created a longer-than-usual protruding stoma, which the patient found easier to manage.

- Initially, the patient received only one bedside lesson on how to change the pouch. The rest of the stoma care was self-taught through extensive research, including resources from the Mayo Clinic and studies on new medical technologies.

- After the operation, the patient underwent chemotherapy and radiation, experiencing minimal side effects. They continued working throughout, emphasizing that a positive attitude was crucial to their recovery.

- Over the years, the patient also dealt with other medical issues, such as a mild heart attack in 1999, gallstone surgery in 2013, and a hernia that eventually led them to stop heavy lifting.

- At 74, the patient reports living a normal lifestyle, with the only routine change being the extra time needed for bathroom visits during appliance changes. They encourage others not to let a stoma redefine their identity.

- The patient views the ostomy as a minor inconvenience and wishes more people would adopt this perspective.

- In a published interview, they share more about life with an ostomy, offering insights and encouragement to others.

- A positive mindset is highlighted as important, with several people praising the author's attitude and encouraging others to adopt a similar outlook.

- The story also introduced some to the "Ost EZ Vent," a pouch-venting add-on that helps manage gas build-up. One reader found a UK supplier online and ordered samples, finding it a useful accessory.
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