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May 03, 2016

How much pain is too much? Need advice on post-ileostomy pain.

The topic is about understanding and managing pain after an ileostomy, particularly when the pain seems excessive or prolonged. Debbi, who had an emergency ileostomy following a surgical error, is experiencing severe and persistent pain months after her surgery. She is seeking advice on whether this level of pain is normal and how to proceed with her recovery.

Here are some helpful insights and advice for anyone in a similar situation:

1. Severe and ongoing pain months after surgery is not normal. It's important to seek an immediate evaluation from a different, qualified physician or specialist, such as a colorectal surgeon, gastroenterologist, or pain-management team.

2. Keep searching for a healthcare provider who listens and understands your concerns. Not all providers are the same, and finding the right one can make a big difference.

3. It's crucial to prioritize your health needs over family pressure. If you feel you need medical attention, it's important to pursue it, even if your family has reservations.

4. Pain is your body's way of signaling that something might be wrong. If the pain escalates or prevents you from moving, consider going to the emergency room.

5. Obtain your complete medical records and a clear explanation of the procedures performed. If necessary, seek legal aid to access this information and protect your rights.

6. Break down your problems into manageable priorities. Address uncontrolled pain first, then focus on mobility, infection risk, and legal or record issues. Tackling one step at a time can help prevent feeling overwhelmed.

7. Explore comprehensive pain-relief options, including stronger prescription analgesics, dosage scheduling, and non-narcotic alternatives, while balancing them against tolerable side effects.

8. Engage home-health services, such as a visiting nurse for wound and stoma care, a physical therapist to help rebuild strength, and an occupational therapist for independence training.

9. Contact ostomy-product manufacturers for free samples and personalized fitting advice. They often have certified ostomy nurses available to assist.

10. Utilize national and local resources for education and peer support. Some helpful organizations and resources include:
- United Ostomy Associations of America: http://www.ostomy.org/Home.html
- OstoGroup for discount or free supplies: https://www.ostogroup.org/
- Las Vegas UOAA support group: http://ostomylasvegas.weebly.com/home-page-ostomy-lv.html
- Additional Las Vegas-area support listings:
- https://www.dignityhealth.org/las-vegas/classes-and-events/support-groups/ostomy-support
- http://sunrisehealthinfo.com/community/support-groups.dot
- http://lasvegassun.com/native/mountain-view/2016/apr/24/living-with-an-ostomy-pouch/
- http://www.yellowpages.com/las-vegas-nv/colostomy-supplies

11. Cultivate a positive mindset. Many people who have experienced medical mishaps go on to rebuild fulfilling lives. Focus on persistence and self-advocacy to help navigate your recovery journey.
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