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Apr 26, 2013

Reversal timing and quality of life after colectomy - Experiences and advice?

This topic is about the timing of reversing an ileostomy after a sub-total colectomy and how it affects quality of life. A new member, who has named her stoma "Stella," is considering when to have her ileostomy reversed and is seeking advice on managing her current situation. Here are some insights and advice shared by others:

- The output from the stoma is very liquid, and she wonders if it will thicken over time or if medication is needed. Some medications that can help slow down the output include:
1. Lomotil (diphenoxylate/atropine), which can be taken up to six times a day, adjusting the dose as needed.
2. Imodium (loperamide), with 1-2 doses daily. Many long-term users report no adverse effects.

- To help thicken the stool and reduce watery output, consider these dietary strategies:
1. Eat starchy, low-fiber foods like white bread, pasta, rice, mashed potatoes, applesauce, and smooth peanut butter.
2. Try gelatin-based sweets such as marshmallows or "Jelly Babies."
3. Keep a record of foods and their effects, as some foods like fruit juices, high-sugar items, and nutritional drinks can thin the output.
4. Some people find success with psyllium husk products like Metamucil, but it's best to use them under medical advice.
5. Chew food thoroughly and introduce new foods slowly. Be cautious with fibrous items like celery, popcorn, grape skins, and raw or undercooked cabbage, as they can cause blockages.

- Regarding weight and nutrition before reversal:
1. Surgeons often require patients to regain or stabilize their weight before considering reversal. Some have had to delay the procedure due to complications.
2. Focus on eating balanced, nutrient-dense meals rather than relying solely on simple starches, if your overall health allows.

- When considering the timing and readiness for reversal:
1. Some surgeons suggest a minimum of 8 weeks post-operation, while others prefer waiting until the patient has regained strength and weight, especially after infections or multiple surgeries.
2. It's important to listen to your body. If you don't feel ready, it's okay to postpone the reversal. Surgeons generally support waiting until the patient feels prepared.

- For those living with a permanent ileostomy:
1. Many long-term users report a significant improvement in quality of life, even with frequent watery output, compared to their pre-operation condition.
2. Naming the stoma and maintaining a sense of humor can help psychologically.

- Practical tips for managing an ileostomy:
1. Identify quieter periods for changing the appliance, such as during low-output times or in the shower.
2. Keep a food and output diary to identify patterns and triggers.
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