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Mar 05, 2017

Newly Diagnosed with Atonic Bowel - Seeking Advice

This topic is about someone who has been dealing with severe constipation for many years and has recently been diagnosed with an atonic bowel, meaning their bowel has lost its muscle tone. This condition is irreversible, and the person is considering a colostomy or ileostomy as a potential solution. Here are some helpful pieces of advice and insights for anyone in a similar situation:

- Bring someone with you to medical appointments for support. You can also use your phone to record the conversation or have a friend take notes to ensure you don't miss any important information.

- Prepare a list of questions before your appointment. Don't hesitate to ask your doctor to slow down or explain any terms you don't understand.

- It's wise to seek a second opinion before deciding on major surgery.

- Many people who have undergone a colostomy or ileostomy report significant improvements in their quality of life, especially when their bowel function is unlikely to improve. Pain, urgency, and social limitations often disappear, and changing the appliance becomes routine over time.

- Expect a learning curve, but also long-term satisfaction. Initially, you'll need to figure out supplies and routines, but most people return to their normal activities. Recovery can vary, but some timelines include a 3-5 day hospital stay, driving within 3 weeks, and regaining near-full energy by 3 months.

- There are alternative options, such as an Antegrade Continence Enema (ACE) stoma or caecostomy button, which allow for controlled emptying without an external pouch. Some have used this successfully for many years.

- Practical tips for new ostomates include watching YouTube videos on appliance changes and trying different brands and products until you find one that allows you to go 5-7 days between changes and enjoy a "naked shower."

- Emotionally, choosing a pouch is not about "giving in" but "embracing life." Many people wish they had made the decision sooner rather than enduring years of pain and unsuccessful treatments.

- If a second opinion confirms that the condition is irreversible, an ostomy can offer a reliable and well-established solution that allows most people to resume their normal activities.
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