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41,458 members
Aug 04, 2013

Seeking Advice for Brother's Complex Medical Journey

This topic is about a young man who is facing a challenging medical journey. He has a history of various health issues, including chronic lung disease, asthma, and more. After developing a serious infection, he underwent multiple surgeries, resulting in the creation of a colostomy and later an ileostomy. His recovery has been complicated by infections and other health problems, and his family is seeking support and advice from others who might have faced similar situations. Here are some helpful insights and advice for navigating this difficult time:

1. Information and Online Support
- Explore resources like www.ostomy.org and www.ostomyland.org for guides on products, stoma care, and to connect with others in similar situations.
- Continue using MeetAnOstomate for practical tips and emotional support.
- Watch the ITV/THIS MORNING segment on “Fecal Incontinence” for insights into current treatment options.

2. Seek Higher-Level or Specialty Care
- Consider a referral to UCI Medical Center, known for its advanced technology and comprehensive care.
- Ask current doctors to help apply to the Mayo Clinic, which can be beneficial for complex cases.
- Large teaching hospitals often keep patients until they see improvement.

3. Communication with Clinicians
- Ensure doctors provide detailed explanations about his condition and treatment plans.
- Arrange formal meetings with physicians if discussions at the bedside feel rushed.

4. Infection and Medication Management
- Verify that he is receiving the right antibiotics for his infection and understand the treatment plan.
- Collaborate with pain specialists to manage pain while avoiding opioid dependence.

5. Home Care Considerations
- Managing a wound-vac and two stomas at home is possible with the help of visiting nurses.
- Request in-home teaching from an ostomy nurse to learn proper care techniques.

6. Emotional and Spiritual Support
- Be a strong, encouraging presence for him; family support is invaluable.
- Many find comfort in faith, prayer, and supportive healthcare providers.
- Use forums to share feelings and reduce the sense of isolation.

7. Long-Term Outlook
- Recovery is possible even after extensive surgeries; many have thrived despite similar challenges.
- Stay positive, seek multiple opinions, and use all available resources to improve the situation.
See full discusison
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