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41,410 members
Mar 31, 2009

Living with Crohn's: A 18-Year Journey and Its Challenges

This topic is about a personal journey of choosing life with an ileostomy after enduring 18 years of pain due to Crohn’s disease. The individual shares their experience of living with a stoma and how it has transformed their life for the better. Here are some insights and advice from their story:

1. Living with a permanent ostomy can offer a sense of freedom compared to constantly searching for the nearest toilet. If you are otherwise healthy, having a pouch should not prevent you from pursuing your desires and activities.

2. It's normal to have body-image concerns, especially in situations like communal showers. A practical tip is to wear swim shorts and change under a towel, similar to what you might do at the beach, to maintain comfort and privacy.

3. Many people find that the benefits of having an ostomy outweigh the drawbacks, especially after years of dealing with a debilitating illness. For instance, one person has been living actively with a bag for 35 years following ulcerative colitis.

4. Those with a J-pouch may face different challenges, such as dissatisfaction with how the pouch functions, hesitance to swim or visit beaches, and concerns about how heavy sweating might affect the pouch's adherence.
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