This topic is about an individual who has been living with an ileostomy since 1971 due to Crohn’s disease. They have undergone multiple abdominal surgeries, with the most recent one in July 2014, which involved hernia repair and moving the ileostomy from the left to the right side. Since December 2014, they have been experiencing a persistent, sharp, burning pain at the 1 o’clock position around the new stoma. Despite trying medications like hydrocodone and OxyContin, the pain remains unresolved. They are seeking advice from fellow ostomates to find the underlying cause of the pain rather than just relying on pain medication.

Here are some insights and advice shared by others:

1. Consider the possibility of an obstruction or narrowing at the 1 o’clock position. A colonoscopy might help visualize and identify any restrictions.

2. Request imaging tests such as a CT scan, ultrasound, or an in-stoma ultrasound/digital exam to rule out a parastomal hernia. Look for any bulge near the stoma.

3. If the current medical team attributes the pain solely to a severed nerve, it might be beneficial to seek a second or even third surgical opinion.

4. Address any vitamin and mineral deficiencies, such as low B-12, vitamin D, magnesium, and calcium. Some people take vitamin D3 three times a week, magnesium weekly, and a daily B-complex supplement.

5. An endoscopy under sedation is generally manageable and could provide valuable insights. Focus on completing the test to obtain concrete findings.

6. Be persistent with appointments and referrals. Being proactive can help speed up the diagnostic and treatment process.

The individual is also dealing with additional pain in the right upper quadrant under the rib cage, and a CCK HIDA scan has been ordered to check for gallstones. They are waiting for a referral back to Walter Reed for further evaluation.