This topic is about living with a disconnected J-pouch after having an ileostomy. A J-pouch is a surgically created internal reservoir that was functioning for 20 years in this case, but after switching to an ileostomy, the J-pouch was left in place but disconnected. Over time, the dormant pouch has started to leak, causing pain and affecting daily life. The doctor has suggested either draining the pouch regularly or removing it surgically, but the person is looking for alternatives to avoid another major surgery. Here are some insights and advice from others who have faced similar situations:

1. Some people with long-term J-pouches have experienced ongoing issues like fistulas, pouchitis, diversion colitis, osteomyelitis, or Crohn’s disease in the retained colon. They eventually opted to have the pouch, rectum, and sometimes the anus removed, with the buttocks closed. While recovery was challenging, they found that removal solved or prevented serious complications.

2. Diversion colitis can occur when small amounts of watery output flow from the stoma into the disconnected pouch. To prevent this, thickening the output so it cannot back-flow might help relieve pain and inflammation without needing surgery. One person successfully manages this by using Absorbagel, a gelling agent that turns liquid output into a thicker sludge.

3. In some cases, dense scar tissue can make removing the pouch impossible or too risky. When this happens, non-surgical management options like output-thickening gels, antibiotics for pouchitis, or periodic drainage might be the only choices.

4. Although no one reported having a formal drainage procedure, several people emphasized that if leakage and pain continue, complete removal of the pouch is the most definitive solution.

5. Leaving any non-functional intestinal segment in place is often described as a "time bomb" because it can become chronically inflamed or infected. It’s important to have a thorough discussion with the surgeon about the risks and benefits of keeping the pouch.