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Aug 17, 2025

Living with a Rectovaginal Fistula and Seeking Support

Living with a rectovaginal fistula after having a colostomy can be quite challenging. The person sharing their experience has been managing a colostomy for over three years and developed a rectovaginal fistula shortly after. Unfortunately, two attempts to fix it surgically were unsuccessful, and more surgery is not recommended due to past difficulties. They deal with constant mucus and bloody discharge from proctitis and inflamed tissue, and while rectal suppositories are prescribed for life, they offer limited relief. While managing the ostomy itself is going okay, the fistula significantly affects their quality of life, and they are seeking practical solutions or shared experiences from others.

Here are some suggestions and insights that might help:

1. Interventional drain option
- A small-bore pelvic drain can be placed under light sedation in about 15 to 30 minutes. This can help divert the fistula fluid internally and prevent leakage through the vagina or rectum. It might be worth discussing this option with an interventional radiologist or colorectal surgeon.

2. Non-surgical mechanical control
- Since stool no longer passes through the rectum, some people find temporary relief by using tampons to absorb mucus, which can help provide more predictable control.
- Another approach is using a glycerin or medicated suppository once a week, waiting a few hours, and then performing a gentle lukewarm enema in the shower to clear out accumulated mucus or stool.

3. Medication to slow residual output
- If there is still excessive output bypassing the stoma, taking an anti-diarrheal like Imodium (loperamide) can help reduce the volume of leakage and irritation.

4. Skin and comfort care
- Regular cleansing after enemas, careful perineal hygiene, and using barrier creams can protect the vulvar skin from acidic discharge and help reduce burning or swelling.

5. Second-opinion centers
- For complex fistulas, specialty clinics such as those at the University of Minnesota or Cleveland Clinic might offer additional assessments, advanced imaging, or innovative therapies that could be worth exploring.

6. Perspective and coping
- Some people have experienced failed repair attempts and have chosen not to pursue further major surgery due to age or health concerns. They focus on managing symptoms and remind themselves that "it could always be worse" to maintain perspective.
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