This topic is about the challenging decisions faced by someone who has undergone multiple complicated surgeries related to an ostomy and Crohn’s disease. The focus is on creating a living will or advance directive to determine when "enough is enough" in terms of medical interventions. Here are some insights and advice shared by others who have been through similar experiences:

- A long-time ileostomate with Crohn’s disease participated in a clinical trial for a device called TIES in 2019, which was later found unsuitable and removed. Despite this, the individual continues to deal with complications like adhesions and blockages, and faces the possibility of more high-risk surgeries.

- The medical team has recommended preparing a living will to specify when the patient would choose to stop further medical interventions if their quality of life declines.

- The individual is seeking advice from others who have faced multiple surgeries on how they researched, reflected, and decided where to draw their personal line.

- The TIES device was only in place for four months, but the damage from it still requires treatment. The individual wants to spare loved ones from making difficult end-of-life decisions by setting clear instructions in advance.

- They plan to share photographs of the TIES implant site to help future patients research the device.

- Due to Crohn’s disease, the individual cannot donate blood and is curious if any organs or tissues might still be usable after death.

Advice and insights from others include:

- A book titled “SOD: Self-Organised Death” is suggested as a resource for understanding living-will decisions.

- A core principle for the directive is to continue treatment as long as there is meaningful quality of life and a will to fight. Once cognition, autonomy, or hope of recovery are lost, life-prolonging measures should be declined.

- Avoid being maintained on machines or under heavy sedation that removes awareness when the prognosis is terminal.

- Practical steps include drafting both a living will and an organ-donor statement, and discussing personal limits with trusted physicians and possibly a spiritual advisor to ensure medical orders align with personal values and likely scenarios.

- Recognize that making these decisions is difficult but can provide peace of mind for both the patient and their loved ones. It’s important to re-evaluate directives over time as health status, surgical options, and personal priorities change.