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Jul 14, 2024

Life After Emergency Ileostomy Surgery

This topic is about the experiences and reflections of someone who underwent emergency ileostomy surgery and the considerations involved in deciding whether to have a reversal surgery. Here are some key points and advice shared by the author and others:

- The author had an emergency ileostomy in September 2020 to remove a benign cyst. Initially, surgeons promised a quick reversal, which led to a strong focus on getting rid of the stoma, affectionately named "Seymour" and "Squirt."

- Several delays occurred, including a move from Wisconsin to Florida, the need for heart stents, a heart attack, and the development of an ostomy-related hernia. Four years later, the ileostomy is still considered "temporary," but the author is symptom-free and hasn't seen an ostomy specialist in two years.

- The central message is to take your time and not rush decisions while still healing. It's important to understand that different types of reversals have unpredictable outcomes. Family, friends, and surgeons may push for early reversal, but it's crucial for patients to research thoroughly and make their own decisions.

- Some brands and products mentioned include Ziggie Clip, a generic hernia belt, Q-Tip nasal swab, Hershey bar, Captain Morgan Spiced Rum, Google, Netflix, Prime Video, and YouTube.

Additional advice and insights include:

1. Take your time: Some people keep lists of pros and cons for up to a year before deciding on a reversal. Objectivity grows with time and experience.

2. Resist outside pressure: While surgeons and family may advocate for reversal, only the patient knows their tolerance for further surgery and potential complications.

3. Consider the risks and benefits: Reversal involves two procedures—re-anastomosis and later bowel re-training. Even a technically perfect surgery can lead to issues like incontinence or frequent urgency. Decide whether life with a pouch is preferable to these potential outcomes.

4. Informed refusal is valid: One person declined reversal after a thorough consultation, and the surgeon appreciated the careful consideration. It's important to weigh the risks carefully.

5. Acceptance, realistic expectations, and thorough self-education are essential before choosing another operation.
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