This topic revolves around the experiences and challenges faced by someone who has had an ileostomy and is considering further surgery, specifically the "Barbie-butt" surgery, which involves removing the rectal stump. The person is dealing with sudden rectal-stump bleeding and is seeking advice and insights from others who might have gone through similar situations. Here are some key points and advice shared by others:
1. **Diversion Colitis and Bleeding**
- It's common for people with an unused rectum to experience mucus and bleeding, often diagnosed as "diversion colitis." Regular monitoring with yearly scopes is recommended.
- Any significant change in bleeding should be promptly investigated to rule out cancer or tears.
2. **Cancer-Risk Considerations**
- There is a significant cancer risk for those with long-standing ulcerative colitis or Crohn’s disease in a defunctioned rectum. Relying solely on surveillance can be risky, as unexpected malignancies have been found after elective proctectomy.
3. **Experiences with Proctectomy ("Barbie-butt")**
- Many find relief from medication, worry, and leakage after removal. Recovery experiences vary, with some returning to work quickly and others needing more time due to complications.
- A typical recovery without complications involves resting and using a cushion in the first month, gradually increasing activity in the second month, and feeling more comfortable by weeks 8 to 10.
- It's important to advance your diet slowly to avoid postoperative bowel blockage.
4. **Technical Choices**
- A sphincter-sparing proctectomy can shorten recovery time. Removing the sphincter requires more extensive healing. Discuss all options thoroughly with your surgeon.
5. **Conservative Measures Before Surgery**
- A combination of Salofalk suppositories and Cortifoam foam is effective for controlling bleeding. Some are trying Remicade infusions, though results are still uncertain.
6. **Comfort and Supplies**
- Using a rubber-donut seat cushion and pillows can help with early sitting. Ostomy-supply companies often provide free samples, which can improve comfort.
- Support groups and ET nurses can offer practical tips that might not be covered during hospital stays.
7. **Sexual-Activity Bleeding**
- Some have experienced rectal-stump bleeding triggered by intercourse. It's advisable to seek medical guidance to maintain intimacy without causing bleeding.
8. **Postoperative Complications to Watch For**
- Be aware of pelvic abscesses, which can mimic normal post-surgical pain. Persistent or worsening pain should be checked with imaging and possibly drained.
- Drains that keep filling and infected sites need antibiotics and close follow-up.
9. **Lifestyle Upsides After Removal**
- Many report freedom from daily enemas, pads, and cancer anxiety. They enjoy the ability to sit, exercise, and travel without worry, and even find beach sand less bothersome with a closed perineum.
See full discusison