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Aug 16, 2017

Mucous fistula woes

This topic is about someone dealing with the challenges of having both an ileostomy and a problematic "closed mucous fistula" that has turned into a painful wound. This situation is particularly difficult as it affects their daily life and studies. Here are some insights and advice that might help:

- The fistula is causing issues by draining blood and mucus, leading to skin breakdown and a strong odor. This can be very distressing and painful, especially when clothing presses against it.
- Managing two bags, one for the ileostomy and one for the fistula, is physically and mentally exhausting. It can also affect self-esteem and bring back memories of illness before surgery.
- The surgeon has suggested either moving forward with J-pouch surgery or learning to manage the fistula, but the person feels emotionally drained and regrets not opting for surgery sooner.

Here are some helpful tips and advice:

1. Document your experiences through writing, photos, or poetry. This can be therapeutic and might even become a book in the future.
2. Don’t apologize for sharing your feelings. Expressing struggles is important and welcomed in the ostomy community.
3. Use cognitive tricks to reduce social anxiety:
- Imagine that everyone wears a bag to feel less different.
- Remember that most people are focused on their own lives, and a medical device rarely draws lasting attention.
- If someone asks, a simple explanation like "I’m wearing a medical device" usually satisfies curiosity.
4. Always carry a full emergency change kit. Having supplies ready can boost your confidence after a leak.
5. Consider scheduling the J-pouch surgery as soon as possible to avoid prolonging a difficult situation.
6. Seek support from your university’s disability or student-services office. Ostomy appliances are recognized as a medical accommodation, and getting institutional support can help ease academic pressures.
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