Living with Dyssynergic Defecation Disorder (DDD) and undergoing ileostomy surgery can be a challenging journey. DDD is a type of pelvic floor dysfunction that can lead to significant digestive issues, and in some cases, like the one shared here, it results in the need for an ileostomy. The person sharing their story has faced years of misdiagnoses and treatments that didn't work, and they are now looking to connect with others who have experienced similar challenges.

Here are some insights and advice shared by others:

1. After facing multiple misdiagnoses, the individual sought help from the Mayo Clinic and Temple University Hospital, where they were finally diagnosed with DDD. They tried various treatments, including pelvic-floor physical therapy, biofeedback, Botox injections, nerve-block injections, and TPN for malnourishment, but none provided lasting relief.

2. The condition led to a severely dilated colon, leaving them bedridden and underweight, until a surgeon performed an ileostomy.

3. Despite the surgery, they continue to experience problems and are eager to find others with the same condition to share experiences.

4. A recommended educational resource is the article “Anorectal Functional Disorders and Pelvic Floor Dysfunction,” which provides comprehensive information on DDD and related disorders. It suggests that DDD might be under-diagnosed rather than rare.

5. For managing symptoms, some members suggest:
- Increasing simple sugars, like fruit juice, to help thin and speed up ileostomy output when it becomes thick or slow.
- Maintaining high oral hydration, especially after a total colectomy/ileostomy, to keep stool moving and prevent obstructions.

6. Surgical experiences from others include:
- Some members have undergone subtotal or total colectomy followed by ileostomy, reporting significant improvements in quality of life once the large bowel was removed.
- One member experienced recurrent colostomy blockages and switched to a loop ileostomy, with plans for a full colectomy if necessary.

7. Community support is available, with several users offering private contact details and encouraging direct messaging for mutual support and shared experiences.