This topic is about dealing with a challenging skin condition called Pyoderma Gangrenosum (PG) that has developed around a stoma. This condition has caused significant pain and skin deterioration, leading to considerations of relocating the stoma. Here are some insights and advice shared by others who have faced similar issues:
- Over the past year, the skin around the stoma has become very painful and deteriorated significantly.
- There have been three hospitalizations due to this issue. Initially, it was thought to be an abscess, but it was later diagnosed as Pyoderma Gangrenosum related to Crohn’s disease.
- The ostomy appliance is being changed daily to manage the condition.
- Long-term systemic steroids (prednisone) are being used to manage a Crohn’s flare and kidney failure, along with a topical steroid.
- While the steroids have prevented the lesion from worsening, they have not improved it, and the pain continues.
- A surgeon is considering relocating the stoma because the PG continues to damage the skin around it.
- There is a request for experiences from others who have had peri-stomal PG, required stoma relocation, and what treatments were effective.
Additional questions and information include:
- After 7 months on both oral and topical steroids, the pain has improved somewhat, but the lesion remains severe.
- There is interest in alternative medications, specifically asking about CellCept.
Advice and insights from others include:
1. Seek out a dermatologist who has experience with complex wound disorders. Large teaching hospitals or universities, such as Johns Hopkins, have been mentioned as successful places to find such specialists.
2. The systemic immunosuppressant CellCept (mycophenolate mofetil) was effective for one person, clearing PG within 2–3 months, although it left some scarring.
3. High-dose prednisone alone resolved severe PG for another person, but permanent scarring was expected even after healing.
4. Accurate diagnosis often requires the expertise of a dermatologist, as ostomy nurses or surgeons may misidentify PG.
See full discusison