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Aug 10, 2025

Facing a Second Ileostomy or Permanent Colostomy Decision

This topic is about a person who is facing a tough decision after dealing with recurrent rectal cancer. They need to choose between having a second temporary ileostomy or opting for a permanent colostomy. Here's a bit more about their situation and some advice from others who have been through similar experiences:

- The person had a temporary ileostomy for a year and underwent a reversal four months ago. They are now dealing with a painful bowel transition, including a dull ache, incontinence, clustering, and unpredictable frequency.
- Unfortunately, the cancer has returned, and another surgery is necessary. The surgeon mentioned that a second reversal would be more challenging due to increased scar tissue and less rectum.
- The choice is between another temporary ileostomy, which might lead to another reversal, or a permanent colostomy.
- The first ileostomy caused severe skin burn, leakage, and pain at the scar site, making the person anxious and eager to hear about others' experiences and advice.

Here are some insights and advice shared by others:

1. Many suggest opting for the permanent colostomy to avoid another reversal. Reversals after extensive rectal surgery can lead to long-term issues like clustering, incontinence, and pain. Some have experienced J-pouch failure years later.
2. A permanent colostomy is often easier to manage than an ileostomy. It typically involves thicker output, less acidity, fewer dietary restrictions, less frequent emptying, and a lower risk of dehydration.
3. The placement of the stoma is important. It's recommended to have the stoma placed away from scars, folds, or bumps, often higher on the abdomen for a smoother surface and better seal.
4. Post-operative healing for either an ileostomy or colostomy usually involves mild-to-moderate pain for up to two months, which generally improves steadily. Healing can be quicker with minimally invasive techniques.
5. Emotionally adjusting to a permanent stoma can be challenging. Focusing on the improved quality of life and survival benefits can help. Preparing mentally before surgery, using mindfulness, and reframing the situation can aid in acceptance.
6. Practical tips for living with a permanent stoma include contacting ostomy-supply manufacturers for free samples to find the best-fitting pouching system and using the right products to prevent or treat skin irritation.
7. Choosing a permanent stoma now might reduce the need for future surgeries, sparing the body from additional trauma.
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