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Aug 02, 2010

Feeling Trapped Post-Ostomy Surgery, Need Advice

This topic is about adjusting to life five months after ostomy surgery, focusing on dealing with phantom sensations and emotional challenges. The person feels trapped by ongoing sensations in the rectal area, even though appliance issues have been resolved. They feel wetness and pressure where the rectum used to be and are unsure if these feelings are normal or where to find reliable answers.

Here are some helpful insights and advice:

1. Phantom sensations are common:
- It's normal to feel "wet," experience rectal pressure, have urges to sit on the toilet, cramps, and even mucus discharge. These are typical phantom sensations, often called "ghost-rectum" sensations, and they usually decrease over time, from several months to a year.
- The rectal stump or remaining mucosa can still secrete mucus, which might occasionally pass through the anus, even if it's sewn shut.

2. Monitor but don’t ignore medical concerns:
- If you experience persistent pain, discharge, or worry, reach out to your surgeon, gastroenterologist, or an ostomy/ET nurse. They are used to these questions and can help rule out infections or other issues.

3. Engage an ostomy nurse and support groups:
- Ask your hospital for a WOC/ET (ostomy) nurse, as they can provide day-to-day guidance that doctors might not have time for.
- Look for a local UOAA Ostomy Support Group or search online forums for a nearby mentor.

4. Gradual re-entry into normal activities:
- Start with small daily outings like short walks, drives, or bookstore visits to rebuild confidence and improve your mood.
- Regular walking is highly recommended as it helps reduce discomfort and enhances your outlook.

5. Expect an emotional grief cycle:
- It's common to experience feelings of loss, depression, and body-image grief months after surgery. Acknowledge these feelings and work through them.
- Remember that the surgery removed a life-threatening disease and ultimately offers more freedom than the illness did before surgery.

6. Practical coping tips:
- Consider carrying or wearing light protection like Poise pads or thin panty-liners to manage occasional leakage or fistula drainage.
- Once you regain strength, continue with your favorite hobbies, such as motorcycle riding or traveling. Many people report living full, active lives post-surgery.

7. Use the community for ongoing learning:
- Keep asking questions and engaging with the community. Thousands of long-term ostomates are willing to share their experiences, product ideas, and encouragement.
See full discusison
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