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41,427 members
Nov 26, 2024

Seeking Support for My Ostomy Decision

This topic is about someone who has been living with Ulcerative Colitis for a decade and is now preparing for a total colectomy and the creation of a permanent ostomy. This decision comes after discovering a rapid increase in precancerous polyps, which is linked to a genetic condition. Despite medical advice supporting the surgery, the person is facing doubt and sadness due to skepticism from friends, family, and coworkers. They are seeking validation and support from others who have been through similar experiences.

Here are some pieces of advice and insights shared by others:

1. Trust the experts
- The collective opinion of a team of medical specialists should be prioritized over the uninformed opinions of friends or family.
- When faced with doubt, consider the simple question: “Live longer or die sooner?” to emphasize the importance of the decision.

2. You don’t owe anyone justification
- The decision is a personal one between the patient and their doctors, and there is no need to justify it to others.
- Limit interactions with negative or intrusive people and focus on those who are genuinely supportive.

3. Turn the conversation around
- Ask those who doubt what they would choose if faced with the same health risks: an ostomy or a life-threatening condition?
- Frame the surgery as a proactive, life-saving step rather than a defeat.

4. Expect—and dismiss—stigmas about the “bag”
- Understand that family and friends may project their own fears about a stoma, often due to a lack of understanding.
- Recognize that any misplaced sympathy or disapproval from others is due to ignorance, not malice.

5. Quality of life can improve dramatically
- Many people with similar conditions report living healthy, medication-free lives for many years after surgery.
- They often experience less pain, no recurrence of disease, and freedom from ongoing medication.

6. Practical coping strategies
- Some choose to inform family about the surgery only shortly before it happens to avoid prolonged discussions.
- Keep explanations brief; educating others can wait until after recovery.

7. Spiritual/psychological framing
- Some find comfort in faith or a higher purpose, while others focus on human resilience and adaptability.

8. Medical questions to raise now
- If the genetic condition is Familial Adenomatous Polyposis (FAP), inquire about the risk of polyps in the small intestine post-surgery and the surveillance plan.
- Discuss with surgeons the extent of the surgery and potential long-term effects, as some regret not preserving part of the colon.

9. Final encouragement
- The community supports the decision, calling it “100% right,” and encourages confidence as the person approaches surgery and recovery.
See full discusison
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