This topic is about someone who is going through a tough recovery after a major surgery called pelvic exenteration, which was done to treat recurrent vulvar cancer. The surgery resulted in a permanent colostomy and a long incision from the chest to the pubic area. Although the surgery was successful in removing the cancer, the recovery has been challenging. Here are some of the difficulties and advice shared:

- The stoma initially had black, necrotic tissue, which eventually fell off.
- The person experienced sepsis in the abdominal wound, requiring weekly cleaning under anesthesia.
- They spent over 100 days in the hospital and a skilled nursing facility.
- The skin around the stoma became raw, and there was a day when the colostomy bag had to be changed 10 times due to leaks.

Now at home, the person is anxious about any pain or cramp, fearing it might indicate new problems, and feels unsure about managing the ostomy.

Here are some helpful suggestions and insights:

1. Seek professional help by scheduling an in-person assessment with a Wound, Ostomy, and Continence Nurse (WOCN). Hospitals and ostomy product manufacturers, like Hollister, offer support from stoma nurses.

2. Consider changing the type of appliance:
- Try using a convex barrier or wafer instead of a flat one, as Hollister provides convex options.
- Use leveling products like Hollister Adapt or similar moldable rings to fill in dips around the stoma and prevent leaks.
- Ensure you are using drainable pouches, as changing the entire system multiple times a day can harm the skin and is often unnecessary.

3. Watch instructional videos from manufacturers or on YouTube to learn the correct application, sealing, and use of accessories.

4. Protect your skin by improving the fit of the appliance, using barrier rings or powders, and allowing time for healing, as frequent leaks and changes can damage the skin.

5. Understand that early-stage stomas can be unpredictable, with varying output volume and frequency. It may take three months or more for routines to stabilize, so give your body time to adjust.

6. Emotional support is important. Feelings of fear and being overwhelmed are common, so consider counseling or therapy and keep communicating with peers, family, and online forums.

7. Remember to focus on your survivor status, celebrate the clear margins, take recovery one step at a time, and seek local advocacy if needed.