This topic revolves around the decision-making process for someone who has lived with an ileostomy for ten years and is considering what to do with their rectal stump. The person is exploring three main options: keeping the rectal stump, creating a J-pouch, or removing the rectum entirely. Here are some insights and advice shared by others who have faced similar decisions:
1. Living with a Rectal Stump:
- Many people have kept their rectal stump for decades without significant issues, though some mucus drainage is common. Regular endoscopic checks are recommended if possible.
- Some manage mild inflammation with specific treatments, humorously referred to as "butt vitamins," though the exact product isn't specified.
2. Dilatation or Ileorectal Anastomosis:
- One person with an ileorectal anastomosis is open to questions. This option reuses the rectum and avoids an external pouch.
3. Rectal Stump Removal While Preserving the Anus:
- A few individuals have had their rectum mostly removed but kept the anal canal. They found recovery manageable and life easier without mucus build-up pain. If a surgeon dismisses this option, seeking a second opinion might be beneficial.
4. Complete Proctectomy and Permanent Ileostomy:
- Some have undergone laparoscopic total removal, reporting manageable pain and a full recovery. Long-term satisfaction is high, with no major issues except occasional phantom sensations.
- Concerns about nerve or sexual function issues are generally unfounded, as most report a happy and normal life post-surgery.
5. J-Pouch Experiences:
- Experiences with J-pouches are mixed, with some initial success followed by complications like obstructions and sepsis, leading to a permanent stoma.
- Those with Crohn’s or a combination of UC and Crohn’s are at higher risk for J-pouch failure. Listening to one's instincts is advised.
6. Alternate Continent Options:
- The BCIR (Barnett Continent Intestinal Reservoir) was tried by one person but eventually abandoned due to complications.
7. Practical Tips and Products:
- Disposable underwear, like "Depends," was recommended in the past for J-pouch users.
- Modern convex appliances for stomas are praised for their reliability and suitability for an active lifestyle.
Overall, if the rectal stump is symptom-free and can be monitored, conservative management is a reasonable choice. However, chronic pain, mucus retention, or an unmanageable stricture may necessitate removal. J-pouch outcomes can vary, especially with Crohn’s involvement. Recovery from laparoscopic proctectomy is typically quick, and many report excellent long-term quality of life with a permanent ileostomy.
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