This topic is about finding support, confidence, and practical tips through the Meet-an-Ostomate (MAO) community. The originator of the discussion shares her journey of waking up with a new ostomy and the challenges she faced in adjusting to this life change. She found local support groups unhelpful but discovered a wealth of support and information through the MAO community. Here are some insights and advice shared by the community:
1. The originator explains her background:
- Her surgery was due to an intestinal blockage, and a surgical error led to chronic diarrhea, making the ostomy a lifesaver.
- The most challenging aspects were the sudden change in her body and the complete loss of bowel control. Despite ongoing good and bad days, she has accepted the ostomy because it means she is alive.
- Fear of public accidents initially kept her at home, but MAO taught her techniques like colostomy irrigation, which local nurses never mentioned.
2. Online vs. local support:
- Many members found MAO by chance when local groups were unavailable, inconvenient, or too narrowly focused. MAO allows people to express themselves freely and get immediate, practical answers.
3. Emotional adjustment:
- It's normal to feel strange seeing part of your bowel on the outside. Give yourself time to adapt and be gentle with yourself.
4. Odor management:
- Expect some odor when emptying the pouch. Commercial sprays and fresheners can help, but may not eliminate it entirely, so plan ahead if sharing a bathroom.
5. Appliance handling:
- Cutting the wafer precisely is easier with a high-quality pair of small, sharp scissors.
6. Leakage and skin care:
- Members often turn to MAO for solutions to leakage problems after trying various combinations of bags and seals. Shared tips often succeed where local advice fails.
7. Irrigation:
- Colostomy irrigation can be "life-changing," significantly reducing leaks and extending wear time. Many stoma nurses never suggest it, so users learned the method through MAO.
8. Community participation:
- Frequent contributors can receive complimentary "honorary" membership months, even without a paid subscription, encouraging continued knowledge-sharing.
9. In-person groups that work:
- Some areas have effective in-person groups, such as a hospital-based group on the IL/WI border led by an ET nurse who is also an ostomate. These groups offer monthly meetings, newsletters, picnics, and holiday parties. Members recommend supplementing such groups with MAO for 24/7 support.
See full discusison