Living with a recto-vaginal fistula and an ileostomy can be a unique and challenging experience. The person sharing their story has had an ileostomy since 2004 to help manage a recto-vaginal fistula, a condition that can feel quite isolating due to its rarity. Here are some insights and advice from others who have faced similar challenges:

- The fistula started as an abscess that kept coming back. It took three years and an MRI to finally diagnose it as a recto-vaginal fistula.

- Various treatments were attempted, including seven seton sutures and multiple direct repairs. Unfortunately, some repairs failed, leading to stool passing through the vagina.

- An ileostomy was created to protect further repairs, but complications like hernias, diabetes, and other health issues followed. The person has undergone about 20 anesthetics since 2001.

- Surgeons have suggested moving the stoma and repairing the hernia again, but the person feels it's time to adapt to life with the current ileostomy and hernia.

- They are seeking advice from others who have successfully healed their fistulas.

Here are some shared experiences and advice from others:

1. Multiple repair options:
- Some have experienced up to 7-8 failed repairs before finding success.
- Success was sometimes achieved with an anal sphincteroplasty by an experienced colorectal surgeon.
- Others needed a two-part procedure or removal of the remaining rectum with drainage tubes to stop infection and allow healing.

2. Expect long healing times even with a diverting stoma:
- Healing can take years; one person with a loop colostomy needed four years for the tract to close.
- Some chose to keep their "temporary" stomas permanently to avoid further surgery.

3. Choosing permanent diversion can restore quality of life:
- Those who accepted a permanent ileostomy or colostomy often regained mobility, confidence, and normal sexual activity.
- A stoma can be a better option than repeated surgeries and ongoing infections.

4. Managing fistulas that persist beside a stoma:
- Adjust the flange/skin barrier to allow the fistula to drain without affecting the seal.

5. Supplement mentioned:
- Aloe Gold from Univera is mentioned by one person as helpful for calming digestive issues. (This is a personal testimonial.)

6. Sexual and gynecological considerations:
- Radiation, scarring, or repeated repairs can affect the vaginal canal, making it important to discuss potential long-term effects with surgeons.
- Some needed twilight anesthesia for pelvic exams, while others enjoyed sex again once the infection and fistula were resolved.

7. Emotional support:
- Connecting with others who share this rare condition can reduce feelings of isolation.
- Patience, self-acceptance, and focusing on the positives after surgery are emphasized by many.