Topic Explanation
The forum discussion revolves around a user seeking advice and insights before undergoing a loop ileostomy surgery to address life-long slow transit constipation and pelvic floor dyssynergy, compounded by pudendal neuralgia from endometriosis. The user has failed conservative treatments and is hopeful that the surgery will improve their quality of life. They are preparing for their first meeting with a stoma nurse and are looking for questions to ask and things to consider before the surgery. The user also has hEDS and POTS, which could complicate the surgery and recovery.
Advice and Insights
1. Pre-Surgery Assessments and Tests:
- Ensure a high-risk anesthesia assessment is done, especially if you have conditions like EDS.
- Consider an echocardiogram to rule out vascular EDS and assess heart health.
- A sitz marker test can help determine which parts of the colon have dysmotility.
- Anal manometry and MRI defecography tests can provide insights into pelvic floor dysfunction.
2. Surgical Considerations:
- Discuss the type of reversal options available and the potential for keeping the colon healthy for future irrigation and scoping.
- Understand that a loop ileostomy allows for easier reversal if needed.
- Consider the benefits of allowing the new connection to heal before putting it to use, as it may fare better overall.
3. Post-Surgery Concerns:
- Be aware of potential dehydration issues post-surgery, especially with conditions like POTS.
- Prepare for the mental toll and lifestyle changes post-surgery; having a support system is crucial.
- Understand that feeling anxious or like you are "giving up" is normal, but reframing it as a new chapter can help.
4. Personal Experiences and Tips:
- Some users experienced a significant improvement in quality of life after a loop ileostomy, even if multiple surgeries were needed.
- Having a good medical team that understands atypical needs is essential.
- Be prepared for a period of increased fatigue before surgery as the body conserves energy for recovery.
5. Additional Resources and Support:
- Engage with others who have had similar experiences for support and advice.
- Utilize forums and discussion groups to gather more information and personal stories.
6. Pain Management:
- Be cautious with treatments like Botox injections for pelvic floor issues, as they can be painful and may not
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