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Mar 13, 2007

Experiencing Severe Pain and Pressure with an Ileostomy

This topic is about a person who has a permanent ileostomy and experiences severe rectal pressure and shooting pain episodes. These episodes are sudden, very painful, and can happen while simply standing. The person is looking for advice and insights from others who might have experienced similar issues. Here are some helpful points and advice shared by others:

1. After consulting with a surgeon, it was found that inflammation, such as proctitis or ulcerative colitis, was present in the rectal stump. A steroid foam called Proctofoam HC was prescribed, which helped reduce the frequency of these painful episodes.

2. Many people with long-term ileostomies report similar sudden spasms in the rectal area. These can last from a few seconds to up to 40 minutes and are often described as extremely painful.

3. Possible causes for these episodes include:
- Phantom pain or spasms of pelvic nerves after rectum removal.
- Inflammation or residual ulcerative colitis in the rectal stump.
- Accumulation of mucus in the closed rectum, which can harden and cause pain.
- Leftover feces or gas if part of the colon is still in use.
- Cramps from certain foods or partial bowel blockages.
- The rectal stump still producing mucus even when disconnected.

4. Suggested ways to relieve symptoms include:
- Using Proctofoam HC, which many find very effective.
- Glycerin suppositories to help soften and expel hardened mucus.
- Gentle saline or water irrigation of the rectal stump, but only after consulting a doctor.
- Taking antispasmodic tablets like Buscopan.
- Avoiding large amounts of fibrous foods that can cause blockages.
- Trying abdominal massage, controlled breathing, or gripping a solid object during an attack.

5. For medical follow-up, it is recommended to:
- Consult a colorectal surgeon or gastroenterologist for a thorough evaluation.
- Seek a second opinion if pain persists or worsens.
- Avoid chronic use of narcotics for pain management and look for alternative solutions once the cause is identified.

6. Some people find that these pain episodes lessen or disappear over time. However, even after complete removal of the rectum, some may still experience similar sensations.
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