This topic is about someone who, five weeks after having permanent ileostomy surgery due to ulcerative colitis, started experiencing sudden and intense stabbing and burning pain at the stoma site. Their doctor suspects this might be due to a rare nerve-related issue and suggested seeing a pain specialist, but didn't provide a specific treatment plan. The pain is unpredictable and can be very severe, so the person is looking for ways to manage or eliminate it.

Here are some helpful insights and advice shared by others:

1. The pain often occurs just before or during stoma activity. The surgeon mentioned it might be due to "nerves waking up when they shouldn't" and prescribed Neurontin (gabapentin), though its effectiveness is still being evaluated.

2. The person noticed that parts of the stoma were being flattened by the pouch, which seemed to worsen the pain. Adjusting or replacing the appliance helped, indicating that poor pouch placement might be a factor.

3. Small skin wounds near the stoma can feel like nerve pain. It's a good idea to:
- Have a stoma nurse check the area.
- Use ostomy or stoma powder to fill any open spots and change the barrier every four days until the skin heals.

4. For Crohn’s-related peristomal ulcers, medical teams might:
- Use systemic treatments like Remicade (infliximab).
- Continue local care with stoma powder as mentioned above.

5. Nerve-related pain can sometimes be managed with medications like Neurontin (gabapentin) and other drugs specifically for nerve pain.

6. If the skin right at the stoma's opening is very irritated because the top of the stoma is level with the skin, using silver nitrate sticks to cauterize the area has provided quick relief for some people.

7. The fit of the appliance is important. Make sure the pouch and wafer do not press on or flatten the stoma. Replace the appliance quickly if it starts to cause discomfort.

8. Establishing a routine for changing the appliance during a "quiet" time can help reduce stress and avoid unexpected output. For example, you might wake up, have a coffee, wait about 30 minutes, then shower and change the appliance.