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Aug 05, 2012

Constant feeling of needing to go after ileostomy surgery - any suggestions?

This topic is about a person who, after having a permanent ileostomy, is experiencing a persistent sensation of needing to have a bowel movement, even though they no longer have a functioning rectum. This feeling, often referred to as a "phantom" urge, had subsided but has recently returned. The person is seeking relief from this sensation without relying on narcotics like Vicodin. They also mention having a large parastomal hernia and some fatigue but feel that their overall quality of life has improved since the surgery.

Here are some pieces of advice and insights shared by others who have experienced similar issues:

1. Temporary relief:
- Sitting on the toilet for a few minutes can help ease the sensation. Some find it helpful to bring along reading material or something humorous to pass the time.
- Using a "do-nut" or ring cushion can make sitting more comfortable by reducing pressure.

2. Managing mucus or rectal stump issues:
- Regular rectal irrigation, such as using a Fleet® enema, can help flush out mucus, reduce odor, and relieve pressure.
- Anal plugs or tampons can absorb residual mucus and keep the area dry, though discomfort might come from the plug itself rather than mucus buildup.

3. Dietary and beverage triggers:
- Reducing caffeine intake, especially coffee, may help as it can provoke the phantom-defecation feeling.
- Some people find that chocolate and coffee together can trigger gas and the urge.

4. Bladder influence:
- A full bladder can press on pelvic structures, intensifying sensations and potentially dislodging plugs. Regularly emptying the bladder may reduce discomfort.

5. Possible gout or uric-acid link:
- Some have noticed a connection between gout flares and rectal discomfort. Staying well-hydrated has helped manage gout and might also ease pelvic symptoms.

6. Reassurance and expectations:
- "Phantom rectum" sensations can persist or appear years after surgery, even if the rectum has been removed. While distressing, they are common and usually harmless.
- Emotional responses like tearing or crying are reported and seem to be part of the phenomenon rather than purely psychological.
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