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Feb 05, 2020

Frankenstoma - A Gruesome Stoma Revision Experience - Need Advice!

This topic is about a person who recently had a second surgery to revise their stoma, which is an opening created during surgery to allow waste to leave the body. While there were some positive outcomes from the surgery, such as the stoma being in a better position and no longer causing pain when moving, there have been several complications and concerns since the procedure. Here are some insights and advice that might be helpful:

- Be proactive in your care. Make sure to ask questions and insist on having a surgeon or on-call physician examine your stoma if you have concerns. Don't hesitate to seek a second opinion if needed.

- Keep a detailed record of your experiences and any issues you encounter. This can be useful if you need to escalate your concerns to higher authorities like the hospital CEO, head nurse, or even the local media if necessary.

- Monitor your health closely, especially for signs of anemia or continued bleeding. Arrange for a repeat complete blood count (CBC) test as soon as possible. If you feel light-headed, weak, or notice heavy bleeding, go to the emergency room immediately.

- For pain management, try to use non-opioid medications like Tylenol (acetaminophen) to avoid the risk of bowel obstruction that can be caused by opioids. Be cautious with medications like oxycodone and even high doses of Imodium, as they can slow down gut movement.

- If you're not satisfied with the follow-up care from your surgeon, request daily surgical rounds. Many people with ostomies have reported that their surgeons personally checked and even changed their early pouches.

- Take care of the skin around your stoma. Ask for guidance on using stoma powder and skin-prep wipes or barriers. You might also consider silicone-based products for better skin protection.

- Keep a personal medical file that includes your medical history, a list of medications and supplements, past procedures, and recent lab results. Carry printed copies with you to share with any new healthcare providers. Some systems, like "MyChart," can automatically post visit notes and lab results, which you can print and use.

- Arrange for someone to stay with you at home during the first few days after surgery. You might need immediate help if you experience fatigue or sudden bleeding.

- It's normal to feel emotional about your situation. Writing about your feelings can help, and remember that the appearance of your stoma doesn't determine its functionality. Many stomas improve in appearance as swelling goes down.

- Stay connected with supportive peers who can offer humor and community. Some people find comfort in sharing jokes, poems, or puns to ease stress.
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