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Oct 12, 2023

Seeking Positive Experiences After Loop Ileostomy Reversal

This topic is about managing life after a low rectal-cancer loop ileostomy reversal, focusing on the challenges and potential positive outcomes. It shares the journey of someone who has undergone this procedure and is now dealing with some difficult side effects. Here are some insights and advice that might be helpful:

1. **Current Situation**
- After an emergency loop-ileostomy reversal, the individual is experiencing severe diarrhea, urgency, and poor control.
- The current treatment includes Imodium (loperamide) and Metamucil (psyllium) to help manage these symptoms.
- Surgeons have mentioned that these issues might be long-term, and a permanent colostomy could be an option in the future.
- Emotionally, there is a lot of anger and regret about the original cancer surgery, and a search for positive experiences or hope is ongoing.

2. **Medication and Fiber Use**
- Combining Metamucil, which adds bulk, and Imodium, which slows down bowel movements, can be effective. Many have found success with this combination.
- THC, where legal, can also help slow down bowel transit and provide relief, and some prefer it over opioids.

3. **Time and Adaptation**
- It's common to experience major urgency and diarrhea shortly after reversal, but these can improve over time as the body adjusts.
- Joining support groups like "Reversal Roundabout" on Facebook can provide shared experiences, tips, and diet logs.

4. **Considering a Permanent Ostomy**
- Many people report significant improvements in quality of life with a permanent colostomy or ileostomy, including predictable output and the ability to return to normal activities.
- Managing a stoma often becomes routine and is seen as less challenging than dealing with uncontrolled bowels.

5. **Seeking Second Opinions and Specialized Care**
- Consulting with major colorectal programs or teaching hospitals can provide more options and help in making informed decisions.
- Having control over the timing and options can help reduce feelings of anger and improve mental well-being.

6. **Psychological Support**
- Feelings of anger and distress are common, and connecting with others who have faced similar situations can be beneficial.
- Some find it helpful to adopt a "tough love" perspective, recognizing that an ostomy can be both life-saving and life-enhancing.

7. **Related Conditions and Experiences**
- Those with prior J-pouch or small-intestine-to-rectum connections have experienced similar issues until opting for an ostomy.
- Conditions like pelvic-floor dysfunction and very low anastomoses can make long-term bowel control difficult, making a stoma a valid and positive solution.

These insights aim to provide support and options for those navigating life after a loop ileostomy reversal, offering hope and practical advice for managing the journey ahead.
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