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Aug 22, 2023

Post-Proctolectomy - Seeking Advice on Recovery and Post-Op Care

This topic is about preparing for and recovering from a laparoscopic proctolectomy, which involves removing the rectum and closing the anus. The person sharing their experience has had an ileostomy since 2016 and is undergoing this surgery due to ongoing issues with Crohn’s-related proctitis and cancer concerns. They are seeking advice on what to expect during recovery and whether others have felt "cured" of their inflammatory bowel disease (IBD) after the procedure. Here are some insights and advice shared by others who have gone through similar experiences:

1. Pain, Sitting, and Cushions
- Expect significant soreness for several weeks, with many unable to sit normally for 3 to 8 weeks.
- Early on, lean on one cheek or avoid sitting altogether.
- Recommended cushions include hospital "egg-crate" or "waffle" cushions, small squishy micro-bead pillows, and ROHO air-cell cushions.
- Avoid doughnut cushions and thick pads as they can add pressure to the incision.

2. Mobility and Lifting
- Many people were up and walking within hours but moved slowly for 1 to 2 weeks.
- Roll sideways to get in and out of bed; a raised, wheeled over-bed table can help you stand to eat or use a computer.
- Typical lifting limits are 10-15 pounds; even a gallon of milk can strain the wound. Let others handle heavy tasks like groceries and snow shoveling.
- Some followed a strict "no-sit, minimal-bend" regimen for two months, using tools like grabbers and elastic shoelaces, guided by a wound-ostomy nurse and at-home physical therapy.

3. Wound Care and Healing Times
- Keep the "Barbie butt" clean and absolutely dry from day one.
- Ask for dissolvable stitches to avoid the pain of removal.
- Healing times vary: 2-4 weeks for uncomplicated cases, around 3 months is common, and more than a year if there is radiation damage or chronic infection.
- Risks include abscesses, infections, and incisional separation, but antibiotics often resolve early abscesses.
- Home-health or visiting nurses and a good wound-ostomy nurse are invaluable for monitoring the wound and stoma.

4. Abdominal/Operative Details
- A laparoscopic approach usually means less abdominal pain, but open surgery may be necessary if scar tissue prevents scope access.
- An ileus can extend the hospital stay to about 2 weeks, allowing for early in-hospital wound monitoring.

5. Diet and Supplements
- An early low-fiber, nutritionally dense diet is advised; consider consulting with a dietitian.
- Maintaining vitamin D3 levels in the 40 ng/mL range (e.g., 4,000 IU daily) was credited with faster healing by one person.

6. Long-term Outcomes
- Several people reported being "cancer-free immediately," with no need for medication and no UC/Crohn’s symptoms.
- Some still experience occasional discomfort when sitting but are otherwise unrestricted.
- Chronic radiation wounds or a history of pouchitis may prolong healing but do not always require ongoing medication.

7. Resources and Professional Help
- Useful resources include veganostomy.ca, Sloan-Kettering post-surgical guides, Phoenix magazine, and Debra Borkovitz's blog post "No Sitting, Minimal Bending, Mostly Bed Rest."
- Engage wound-ostomy nurses early and try multiple ones until finding a good fit.

8. Rectum-in-place vs. Removal
- Many people and surgeons cite a cancer risk if an unused rectal stump remains for more than 5-6 years. Elective removal can avoid future malignancy and end chronic bleeding and mucus issues.
See full discusison
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