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Jun 26, 2019

Seeking Advice - Elective Colectomy/Ileostomy Experiences

This topic is about the experiences and considerations of undergoing elective surgery, such as a colectomy or ileostomy, for treating ulcerative colitis. It includes personal stories, advice, and insights from those who have gone through similar procedures. Here are some key points to consider:

1. Quality-of-Life Improvements
- Many people who have had a permanent ileostomy or colostomy report significant improvements in their quality of life compared to dealing with incontinence, pain, and constant bathroom needs. Some wish they had opted for surgery much earlier.
- Post-surgery, individuals often find it easier to travel, work, study, and engage in various activities without the burden of medication.

2. Regrets and Cautions
- Some individuals still face challenges like frequent appliance failures, gas, and skin irritation, feeling that the problems have just shifted location.
- The emotional impact of surgery can be significant, so having strong support and asking all your questions is crucial.

3. Tips on Appliances and Products
- Experiment with different manufacturers to find the best fit; some find convex wafers last 4–6 days.
- Two-piece systems allow for easy switching between daytime and nighttime pouches without removing the wafer.
- Keep spare supplies handy and learn techniques like "burping" gas. An ET/WOC nurse and local support groups can be very helpful.

4. Surgical and Procedural Options
- An end-ileostomy is often the safest choice for those with pancolitis, while a J-pouch carries a risk of pouchitis and potential Crohn’s disease.
- The BCIR is an option in certain locations but requires additional surgery and management.
- Pelvic-floor physical therapy might be worth trying but is unlikely to reverse full-colon disease.
- It's important not to delay surgery until you're malnourished or on high-dose steroids, as this can complicate healing.

5. Medications and Alternative Therapies
- Some people stop using biologics like Entyvio after surgery and remain symptom-free.
- Fecal microbiota transplant (FMT) has helped some patients but is still experimental.
- CBD and THC oils are praised by some for symptom relief.

6. Pre-Op Preparation
- Review all medical records and seek independent explanations.
- Wear different outfits during pre-op stoma-site marking to find the best location.
- Discuss intimacy and body image with your partner; most partners adapt quickly.

7. Post-Op Recovery Expectations
- Hospital stays typically last 1–2 weeks, with a 4–6 month period to feel "normal" again, longer if very ill before surgery.
- There is a learning curve with diet, output, and skin care.
- Emotional adjustment varies, and counseling or online forums can be beneficial.

8. Final Encouragement
- Many people encourage being brave, as surgery can significantly improve life if you're already suffering.
- Regularly evaluate your quality of life, and consider surgery if it continues to decline.
See full discusison
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