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Mar 05, 2023

Experiences with Colostomy for Pelvic Floor Dysfunction

This topic is about considering a colostomy, and possibly reversing it, for someone dealing with pelvic floor dysfunction. This condition makes it difficult to expel stool because the pelvic floor muscles contract instead of relaxing, which is suspected to be anismus or obstructed defecation. The person is seeking advice from others who have experienced similar situations. Here are some insights and advice shared by others:

- If you have received a colostomy for pelvic floor dysfunction, sharing your experiences with challenges, pain, or mucus issues can be helpful.
- Whether you have kept the stoma permanently or had it reversed, your journey can provide valuable insights.
- If you are working toward a reversal, sharing your process and experiences can be beneficial.

Additional context includes:

- Extensive testing has been done, including anorectal manometry, balloon expulsion, various imaging tests, and colonoscopy, with no clear diagnosis but a suggestion of anismus.
- Aggressive laxatives, pelvic-floor biofeedback, and cognitive-behavioral therapy have not been effective.
- Eight months after a sigmoid colostomy, there is constant rectal pain, tenesmus, mucus build-up, and a small peristomal hernia, with no relief from medications.
- The person is considering a colostomy reversal but needs to convince a colorectal surgeon.
- There is also a suggestion to consider a total proctocolectomy with end-ileostomy, which the person is hesitant about.
- Plans include repeating tests, adding a full-gut motility study, and consulting more surgeons.
- Specific questions are directed to those with ileostomies about leakage, skin issues, diet, and other concerns.

Advice and insights from others include:

1. Reversal decision:
- Attempt reversal only if the original dysfunction is clearly corrected; otherwise, problems may recur.
- One person is nearing reversal after two years of intensive pelvic-floor physiotherapy.

2. Permanent stoma as a solution:
- Some with severe pelvic floor dysfunction have opted for permanent ostomies, improving their quality of life.
- Removing the rectum can help eliminate mucus build-up and pain.

3. Importance of full diagnostic work-up:
- Rule out colonic dysmotility and pelvic-floor problems with appropriate tests.
- Some symptoms may be colonic rather than pelvic, requiring different treatment.

4. Surgical centers and expertise:
- Cleveland Clinic is recommended for obstructed defecation and complex pelvic-floor disorders.
- Choose a surgeon who understands pelvic-floor dysfunction and seek another opinion if necessary.

5. Life with an ileostomy:
- Experiences with appliances, diet, and overall satisfaction are shared, highlighting the importance of hydration and proper nutrition.

6. Other conservative/adjunct measures:
- Pelvic-floor biofeedback and Botox injections may not be effective for severe anismus.
- Cognitive-behavioral therapy has limited benefits when mechanical obstruction persists.

7. Product selection and skin care:
- Finding the right pouch brand and style can extend wear time and manage skin irritation.

8. Testing techniques mentioned:
- Various tests are used to diagnose and understand the condition better.

9. Terminology note:
- "ODS" (Obstructed Defecation Syndrome) is another term encountered in research.
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