This topic is about the possible symptoms of a hernia in someone who has had a long-term left-sided ileostomy. An ileostomy is a surgical opening created to allow waste to exit the body through the abdomen. Here are some insights and advice shared by others who have experienced similar situations:

- The person has had an ileostomy since 1971, originally on the right side but moved to the lower left abdomen in 1979 due to surgery for toxic megacolon. For the past year, they have felt a burning sensation from the left hip bone to the edge of the stoma, though there is no pain inside the stoma.

- There is a noticeable raised area under the adhesive, suspected to be a hernia, which causes the wafer to lift on the left side. This has led to the need for daily appliance changes, whereas previously, changes were needed every 5 to 10 days.

- They had a previous stoma hernia that required open repair due to extensive adhesions. An evaluation is scheduled at Walter Reed/Bethesda, but it is unclear if a surgeon or an enterostomal therapist will assess the situation.

- The appointment has been moved up, and the same multidisciplinary GI/surgical team has been following the case since 1986. An MRI is scheduled, with plans to heal the irritated skin first before reassessing hernia repair due to heavy scar tissue and surgical risk.

- Daily life has become more restricted, with slower walking, no yard work, and sleeping in a recliner to prevent leaks. There is frustration that the skin cannot heal while the pouching surface is uneven.

Advice and insights from others include:

1. Location check and follow-up: Ileostomies are usually on the right side, but relocation during surgery is possible. It's important to update others after the appointment.

2. Appliance wear-time and skin care: ET nurses often recommend changing appliances every 3 to 4 days, with 7 days being the maximum. Frequent leaks and skin irritation can be due to the bulge, so it's important to involve an ostomy nurse during clinic visits.

3. Burning or stinging causes: This could be nerve-related or linked to diet. One person found no food trigger despite elimination trials, while another with similar symptoms was diagnosed with nerve pain and prescribed Lyrica (pregabalin) for relief.

4. Hernia management and surgical caution: Some have experienced stoma hernias that recurred soon after repair. Surgeons may delay elective repair due to high recurrence and poor healing in scarred tissue. Conservative measures like diet, exercise, and hernia belts offer limited help, and hernias may eventually require emergency surgery if obstruction occurs.

5. Historical product references: Long-time users recall early supplies from brands like Nu-Hope and Coloplast, noting the progress in modern products but also the limited options available in the 1970s.

6. Emotional support: There is shared frustration that clinicians often underestimate the day-to-day difficulties. It's important to stay connected with peers who are experiencing similar issues for encouragement and support.