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Mar 19, 2018

Phantom sensations after colostomy - Seeking advice

This topic is about experiencing persistent "phantom" rectal pressure after having a permanent colostomy. Even though the rectum is no longer there, some people still feel pressure or the urge to defecate. Here are some insights and advice that might help:

1. Many people who have had an ostomy for a long time, ranging from 6 to over 50 years, report similar "phantom" urges. This is because the nerves and remaining pelvic structures can still create sensations.

2. These sensations often come and go. They might decrease over time, taking several months to years, but they may not completely disappear.

3. Sometimes, a temporary increase in pressure or cramping can be due to mucus build-up in the remaining colon. Passing this mucus usually provides relief.

4. Eating enough dietary protein, especially well-chewed meat, can aid in overall tissue recovery and help reduce issues like blockages.

5. Healing and nerve adaptation take time, often estimated between 6 to 10 years. Patience is important as the body gradually adjusts.

6. Experiencing similar pressure and even minor seepage after a proctectomy is a recognized clinical issue. It's a good idea to discuss these symptoms with your surgeon or stoma nurse to rule out any complications.

7. Various factors such as hormonal changes, sexual activity, certain sitting positions, cycling, and sensitivity from scar tissue can trigger or worsen phantom pain or pressure.

8. General coping tips include:
- Monitoring patterns, such as the menstrual cycle or specific activities, to identify potential triggers.
- Using cushions or adjusting seating or bicycle saddles to reduce pressure on the perineal area.
- Seeking medical evaluation for reassurance and to rule out any physical causes.
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