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Aug 26, 2020

Adjusting to Life with an Ostomy Bag: Share Your Experience

Adjusting to life with an ostomy bag can be a journey, and many people wonder when they will finally feel like they truly "own" it. This topic explores the experiences of those living with an ostomy and shares insights on reaching a point of acceptance and confidence.

- Early hands-on practice can help you feel more in control. Some people felt they "owned it" while still in the hospital because they were allowed to change the appliance themselves, with nurses stepping in only when necessary.

- Having good information before and after surgery can make a big difference. Those who had support from a knowledgeable stoma nurse, mentors, or clear written guidance found it easier to adapt. In the past, a lack of preparation made the adjustment much harder.

- For some, relief from previous illness speeds up acceptance. People who suffered from severe conditions like Crohn’s disease often felt immediate gratitude for their stoma, seeing it as a release from pain.

- Finding the right pouching system and, for colostomates, using irrigation can reduce anxiety. Once leaks were under control, often within three months, many people found they rarely thought about their appliance. Transparent pouches, though initially awkward, can help monitor any issues.

- It's important to stay attentive but not obsess over the stoma. One person learned the hard way that neglect during intense activity can cause problems, so it's best to accept the stoma while maintaining sensible checks.

- Physical activity can be a turning point. Many realized they had integrated the stoma into their normal life when they could do activities like raking leaves or working outdoors without thinking about the pouch.

- Sexual function usually remains intact. Surgeons often check with younger patients about this, and most report no long-term issues.

- Reversal of the stoma isn't always the best choice. Some people, advised to wait at least a year and warned about scar tissue, decided against reversal because they were content with their current situation.

- Perspective plays a big role. Some people never feel like they "own" the stoma, even after years, while others accept it immediately when faced with life-or-death situations. Humor and giving the stoma a personalized name can also help some people cope.
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