Topic Explanation
The forum discussion centers around a user with severe aggressive Crohn's disease, anal fistulas, and perianal disease, who is contemplating making their ileostomy permanent and undergoing a total proctocolectomy and hysterectomy. The user is seeking advice and experiences from others who have faced similar medical conditions and surgeries. They express concerns about pain, additional surgeries, mental strain, and recovery time.

Advice and Insights

- General Support and Encouragement:
- Many users expressed empathy and support, sharing that the forum is a good place for advice and that others have gone through similar experiences.

- Personal Experiences with Similar Surgeries:
- One user shared their experience with rectal cancer, resulting in a permanent colostomy and hysterectomy. They mentioned occasional pain and phantom sensations but emphasized the support from the community.
- Another user discussed their severe Crohn's and the decision to have a total proctocolectomy 15 years ago, which resulted in no symptoms of Crohn's and no need for medication, significantly improving their quality of life.

- Second Opinions and Specialist Consultations:
- It was suggested to seek a second opinion, particularly from a colorectal surgeon who specializes in female pelvic floor issues. One user recommended a surgeon at Cleveland Clinic who offers virtual consultations.
- Consulting with a gastroenterologist in addition to a surgeon was advised to get a comprehensive view of the situation and potential outcomes.

- Considerations for Surgery and Reversal:
- Users highlighted the importance of considering the aggressive nature of Crohn's disease and the potential complications of surgery and reversal. They noted that surgery does not cure IBD and that inflammatory issues might persist.
- The decision should factor in current health, age, and the potential for a quicker recovery due to youth.

- Pain and Recovery Insights:
- Users shared that pain from using the anus and rectum post-reconnection surgery is common. However, after a proctocolectomy, some experienced no phantom pains or urges, though there could be complications like leaks.
- One user mentioned that despite the challenges, the surgery gave them back their health and a life worth living, suggesting that the benefits outweighed the difficulties.

- Personal Decisions and Age Considerations:
- A user who decided on a permanent ileostomy due to age and other factors shared that if they had a similar history, they would