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Jan 05, 2015

Seeking Advice - To Reverse or Not? Stoma Reversal Decision

Deciding whether to go through with stoma reversal surgery is a significant decision for someone who has been living with a colostomy. After an emergency surgery for a bowel obstruction, one person shared their experience of living with a colostomy and how it has improved their life, especially with well-controlled Crohn’s disease. They feel healthier now than when they were dealing with IBS-like symptoms. However, they are eligible for a reversal and are feeling conflicted about what to do next.

- They feel better than ever and worry that another major surgery might disrupt this newfound well-being.
- They feel guilty about considering keeping the stoma, knowing others might not have the option for reversal.
- They sense social pressure and fear being judged as "weak" for not opting for reversal.
- The thought of undergoing surgery again is frightening.

They are seeking practical advice and personal experiences to help make this decision. Here are some insights and advice shared by others:

1. Research and choose your surgeon carefully. The success of the surgery heavily depends on the surgeon's skill and the quality of post-operative care.

2. Consider the cost and supply realities. In the U.S., ostomy supplies can be expensive, and supply-chain issues can be stressful. This might influence the decision to opt for reversal, while those in countries with universal healthcare might view this differently.

3. If you are content with your current health, that is a valid reason to keep the stoma. Do not feel pressured to undergo major surgery to meet others' expectations.

4. Weigh the surgical risks against the benefits. Reversal is a major abdominal surgery with a significant recovery period and potential complications. Some have shared sobering statistics and personal stories of loss after reversal.

5. Compare quality of life. Some who have undergone reversal experienced issues like constant loose stools, nighttime accidents, rashes, or fistulas, and eventually chose to return to a stoma. Others felt that living with a bag permanently was not an option for them and found the reversal worth the risk.

6. Spousal or partner support is crucial. Partners often support the option that keeps their loved one healthiest. Sharing risk data can help them understand and support the decision.

7. Emotional adaptation is possible. Many initially fear or dislike the stoma but adapt over time, learning to manage care independently and resuming normal activities, diet, clothing, travel, and intimacy.

8. Independence in care is empowering. Learning to change and clean the appliance yourself builds confidence and reduces long-term anxiety, allowing caregivers to step back gradually.

9. In dating and relationships, a supportive partner will not reject someone because of a stoma. It is more important to find a caring person than to worry about the appliance.

10. Consider alternatives like a J-pouch carefully. Some decline this option due to high failure rates and frequent bowel movements that could mimic pre-surgery disease.

Ultimately, whether to reverse or keep the stoma is a personal decision. Neither choice is "wrong." It should be based on personal comfort, medical advice, and a realistic assessment of risks, rather than outside opinions.
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