This topic is about dealing with the challenges and decisions faced after having a subtotal colectomy with an end-ileostomy, where a portion of the rectum is left in place. This situation can lead to ongoing issues such as ulcerative colitis (UC) in the rectal stump, mucus discharge, and the need to consider future surgeries. Here are some insights and advice for managing these challenges:
- The rectal stump can produce persistent mucus, bleeding, and episodic pain due to active ulcerative colitis. Medications like Salofalk suppositories and Cortifoam can help, but flares may still occur.
- Normal post-surgical mucus is usually clear or whitish, but during UC flares, it can become bloody, painful, or foul-smelling. There is also a concern about cancer risk in the diseased stump.
- The plan is to delay further surgery for about a year unless an emergency arises, as symptoms are currently tolerable and travel is a priority. However, if flares remain frequent or prolonged, a permanent proctectomy might be necessary.
- Hydrocortisone enemas, which are small in volume, can quickly reduce rectal inflammation related to radiation or UC. They are typically tapered from twice daily to weekly maintenance. Oral steroids are avoided by some due to the risk of osteoporosis.
- Corticosteroid foams like Cortifoam and Salofalk 5-ASA enemas or suppositories are easier to retain than large-volume liquids and are more practical for travel. It's important to check with the prescriber if they deliver medication high enough in the rectum.
- Expect ongoing mucus from an unused rectum, which may have a worse odor than stool. Using baby wipes and changing pads frequently can help, especially during exercise or travel.
- For better absorption and positioning, a folded paper towel can be more effective and cost-efficient than standard sanitary pads.
- If pain and discharge persist despite medical therapy, elective removal of the rectal stump is an option. Some have had the stump excised and stapled closed, with healing taking 4-6 weeks, allowing them to resume activities like horse-riding and heavy lifting without regrets.
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