This topic is about someone who has a J-pouch and is looking for an active community to connect with on the "MeetAnOstomate" website. After having a J-pouch surgery in November 2017, they feel a bit distanced from the main focus of the site, which is primarily about ostomies. Although there is a section for J-pouch and ostomy reversal discussions, it doesn't seem very active. They are considering joining a more specialized site like jpouch.org but still value the friendships and support they've found on "MeetAnOstomate." They plan to check in occasionally to help others.
Here are some helpful insights and advice shared in the discussion:
1. Community encouragement: Many members encourage staying active on "MeetAnOstomate," highlighting that even silent readers benefit from the discussions.
2. Experience of a non-reversed J-pouch: One member shared their experience of having a J-pouch that couldn't be connected due to leaks. They kept their ileostomy but still experienced some leakage. Despite these challenges, their quality of life improved over six years.
3. Long-term J-pouch management tips from a 21-year user:
- Expect about eight bowel movements in 24 hours; plan for toilet access during outdoor activities.
- Maintain a varied diet and chew food thoroughly. Larger food volumes can increase pouch activity, and too much chocolate may cause diarrhea.
- Loperamide can help control output; taking 2 tablets with breakfast and 2 with dinner is suggested.
4. Alternative support resources: While jpouch.org is a dedicated site for J-pouch support, "MeetAnOstomate" remains valuable for its broad ostomy experience and supportive community.