Living with an ileostomy and a surgically-created fistula that won't heal can be quite challenging. After spending three months in the hospital for an unrelated issue, the person was discharged with a new ileostomy and a fistula located just above the stoma. Initially, they were told the fistula would heal, but it turns out to be permanent. The fistula is causing constant pain, frequent bleeding, and persistent leakage because it lies directly beneath the appliance’s plastic ring. This situation requires daily changes of the pouching system unless the person remains very still, which severely limits their activity. They have been waiting for three months for any improvement and are seeking advice while waiting for a surgical follow-up next week.

Here are some helpful insights and advice:

1. It is important to urgently clarify with the surgeon why the fistula was created, what purpose it serves, and whether there are any corrective options available.

2. If there are any signs of infection, such as fever or feeling unwell, it is advised to go directly to a hospital emergency department instead of Urgent Care, as most Urgent Care centers may not have the necessary expertise in ostomy care.

3. A real-world example shared by another person involved a post-surgical fistula that continuously drained bloody fluid. With specific supplies recommended by their surgeon, which were purchased online, and daily care, the fistula closed in about three weeks, and the area smoothed out over six months. This shows that targeted wound-care protocols can be successful when guided by a surgeon.