This topic is about someone who is experiencing significant challenges after a failed one-step J-pouch surgery, which has left them with an ileostomy. They are dealing with persistent leakage, pain, and issues with their ostomy appliance fitting properly. Here are some key points and advice shared by others who have faced similar situations:

- The person experiences continuous cramping after meals and struggles to find an appliance that stays sealed for more than a day or two. This has led to severe skin irritation around the stoma.

- The stoma is located in a deep depression and is retracting, making it difficult to manage. A custom-molded appliance has been ordered but will take two weeks to arrive.

- Temporary advice from a stoma nurse includes leaving the stoma uncovered for two weeks, using zinc-oxide to protect the skin, placing an absorbent pad around it, and restricting the diet to soft foods like yogurt and pudding to limit output. This approach has left the person mostly bedridden.

- A new peristomal hernia is causing constant pain, but the surgeon is unwilling to perform hernia repair or prescribe pain medication until more weight is lost. The person has already lost a significant amount of weight but still has a bit more to go.

- The person cannot shower or swim because moisture loosens the pouching system, adding to their frustration.

- They are feeling desperate and worried about malnutrition and the emotional impact on their teenage son.

Here are some suggestions and insights from others:

1. Consider seeking a second or third opinion from other surgeons. Some members suggest switching surgeons, especially if the current one is blaming weight for the failed procedure. Recommended hospitals include Thomas Jefferson University Hospital in Philadelphia and Mount Sinai Hospital in Manhattan.

2. Investigate whether adhesions might be pulling the stoma inward and ask a new surgeon to evaluate and consider revision.

3. Contact ostomy manufacturers directly for personalized fitting help and free samples. Hollister's customer service is noted for being particularly helpful, with some members achieving longer wear times after receiving advice and trying different products.

4. Do not accept the advice to leave the stoma uncovered for two weeks. Push for an alternative temporary pouching system, such as a convex wafer, paste, barrier ring, or belt, to avoid being bedridden and severely restricting the diet.

5. Provide emotional support to the teenage son by actively pursuing better medical care. Seeing progress can help reduce his worry.