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41,404 members
Dec 06, 2020

Struggling with emotional and physical challenges after rare surgery - seeking advice

This topic is about someone who has undergone a rare and complex surgery called a "double-barrel" ostomy. This procedure was necessary due to a history of stage-4 pelvic cancer and other medical complications. The surgery involves both urine and stool exiting through a single stoma, which has led to various challenges. Here are some insights and advice shared by others to help cope with these difficulties:

1. Mental-health support:
- It's important to see a therapist, ideally one who is trauma-informed, and consider an evaluation for PTSD.
- Group or family counseling programs can be beneficial for both the individual and their relatives.
- While online professional help is available, face-to-face sessions often provide deeper support.

2. Peer support resources:
- Joining the Facebook "Ladies Ileostomy Group" can connect you with other female ostomates who have varied experiences.
- Attending a local United Ostomy Associations of America (UOA) chapter can offer education, access to stoma nurses, and a sense of camaraderie.
- Suggesting that Ochsner Medical Center start a support group for double-barrel patients might be helpful, and connecting with their follow-up program if available.

3. Coping strategies for depression and grief:
- Practice daily gratitude by listing or acknowledging small positives like sunrises, tea, pets, music, or nature.
- Allow yourself to accept and express emotions; crying can be a cathartic release.
- Engage in creative activities such as art, poetry, or music to express yourself and elevate your mood.
- Caring for animals or plants can provide a sense of purpose and joy.

4. Practical living tips:
- Focus on securing independent housing to regain control over your environment and routines.
- Prioritize a nutrient-dense diet and adequate hydration to support your immunity and energy levels.
- Build a modest exercise or strengthening routine as tolerated.

5. Night drainage adaptation:
- For managing mixed output at night, one caregiver suggested using a large vinegar bottle, extra-long tubing, and a bucket to prevent overflow, with spare night bottles offered.

6. Perspective and encouragement:
- Others with multiple stomas or severe radiation damage emphasize that quality of life can improve gradually, week by week.
- Life-expectancy estimates are often inaccurate; focus on making each day meaningful.
- Friends may return when their own health falters; maintain forgiveness and openness while seeking new friends who understand chronic illness.

7. Offer of personal contact:
- Several members invite private messaging for one-on-one conversation, emphasizing the community's readiness to listen anytime.

These insights aim to provide support and encouragement for those facing similar challenges after a double-barrel ostomy surgery.
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