This topic is about the journey of someone who has been living with a permanent ileostomy for four years and now faces the need for another surgery to remove the rectal stump. This is due to the risk of cancer associated with ulcerative colitis. The person is currently healthy but is understandably anxious about the pain and recovery from this major surgery. They are seeking advice and experiences from others who have been through similar situations.

Here are some insights and advice shared by others:

- Reasons for or against removing the rectal stump:
- Many with ulcerative colitis choose removal to stop ongoing inflammation, drainage, and reduce cancer risk, which increases by about 1% each year after ten years.
- Some with Crohn’s disease keep the stump, as the cancer risk is similar to other bowel segments.
- Some opt for regular surveillance scopes every 12–18 months instead of surgery, while others find constant bleeding makes surgery necessary.

- Scope and type of surgery:
- The standard procedure, an open proctectomy, involves an abdominal incision and closure of the anus/perineum. Some surgeons can perform it laparoscopically with smaller incisions.
- Surgery typically lasts 4–5 hours, with recovery taking 6 weeks to 3 months, sometimes longer if complications arise.
- For women, pelvic dissection can affect fertility, so it’s important to discuss this if future pregnancy is a concern.

- Immediate post-operative recovery:
- Expect significant soreness; many couldn’t sit for 3–6 weeks, with some advised not to sit at all initially.
- Sitting aids like horseshoe-shaped or “donut-with-gap” cushions were helpful, as standard ring cushions could pull on stitches.
- Some experienced “phantom urges” to defecate, which faded over time.
- Pain under the ribs after surgery was often due to surgical trauma; checking for conditions like costochondritis or dry pleurisy was suggested.

- Tips to improve healing and comfort:
- Ask the surgeon to leave extra “slack” when sewing the buttocks together to allow for sitting and squatting.
- Daily use of Vitamin E ointment can ease scar tightness and protect from urine sting.
- Heat, such as from a microwaved flaxseed bag, can soothe chest or abdominal wall pain.
- Immuno-suppressants like methotrexate may slow wound healing, so coordinate medication tapering with your healthcare team.
- If narcotics are not an option, discuss alternative pain management early on.

- Everyday living after recovery:
- Most people returned to normal life within months, with many feeling “truly well” for the first time in years.
- Possible long-term issues include minor bleeding from the scar during heavy lifting or exercise, which is usually harmless but can be surgically corrected.
- Scar tissue might split with cycling, so modifying bike seats or avoiding cycling might be necessary.
- Ongoing mucus leakage can occur if rectal tissue or the anal canal is left behind, with a risk of abscess if the stump is not fully removed.
- Women should remind doctors that routine rectal exams are no longer possible or useful.

- Nutrition and flare management:
- During pre-surgery flare-ups, some relied on liquid supplements like Boost or Ensure and bowel rest.

- Psychological and practical considerations:
- Plan for help at home during the first 1–2 weeks, as standing or lying down may be the only comfortable positions.
- Home-care nurses or personal support workers are invaluable for those living alone.
- Seeking second opinions from both a gastroenterologist and a surgeon can help weigh the benefits of cancer prevention against surgical risks.

Products mentioned include Boost and Ensure nutritional drinks, Vitamin E ointment, horseshoe-shaped seat cushions, and microwavable flaxseed heat bags.