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Nov 01, 2019

Need advice - Ileostomy for rectal paralysis?

This topic is about a 56-year-old athlete who experienced rectal paralysis after a nerve injury during weightlifting. This condition has led to significant lifestyle changes and challenges, including the need for daily laxatives and painful water irrigations to manage bowel movements. The individual is considering whether an ileostomy or colostomy could improve their quality of life. Here are some insights and advice shared by others:

1. Type of Stoma
- Many suggest a colostomy might be more suitable than an ileostomy since the colon seems healthy.
- Options include a traditional end colostomy with an external pouch or a loop/venting stoma that allows for normal stool exit without a bag, except during irrigation.

2. Seek Expert Evaluation
- It's important to consult with surgeons and gastroenterologists who specialize in neurogenic bowel and rectal paralysis. Recommended centers include Cedars-Sinai, Mayo Clinic, and Johns Hopkins.
- Consider exploring clinical trials and new therapies, such as stem-cell research.

3. Try the Lifestyle First
- Before making a decision, order free ostomy samples from companies like Hollister and ConvaTec. Wear them in daily activities to understand the impact on your lifestyle.

4. Real-Life Outcomes
- People with long-term ileostomies or colostomies often lead active lives, participating in activities like running and strength training.
- Quality of life can vary; for example, an end-ileostomy might require frequent bag changes, while a colostomy with irrigation can offer longer periods of continence.

5. Surgical Decision Factors
- Ensure the diagnosis is accurate, distinguishing between rectal and generalized colonic motility failure.
- The level of disconnection from the rectum affects lifestyle adjustments.
- Post-surgery, heavy weightlifting might be restricted to protect the stoma and abdominal wall.

6. General Guidance
- Continue exploring non-surgical options while seeking additional surgical opinions.
- Utilize ostomy support forums and local nurses for advice on appliances, skin care, diet, and activities.
- Consider the mental adjustment of wearing a pouch against current lifestyle limitations; many find surgery significantly improves their quality of life.
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