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Dec 15, 2023

Successful Long-Term Ileostomy Reversal Stories Needed

This topic is about understanding what to expect after an ileostomy reversal, especially for someone who has had a direct ileorectal anastomosis. The person sharing their story is dealing with a high-output ileostomy and is concerned about the potential challenges and lifestyle changes that might come with the reversal. They are looking for honest experiences and advice from others who have been through similar situations. Here are some insights and advice shared by others:

1. Give yourself time:
- It's important to wait at least 6 to 12 months before making a decision about reversal. High output often settles after 3 to 4 months.
- Use this time to regain strength and gather information, as mental adjustment is also a part of the process.

2. Quality-of-life comparisons:
- Some people with a permanent ileostomy report having more control and fewer bathroom trips, while a direct connection might lead to frequent stools and incontinence.
- There are success stories of ileorectal anastomosis, but it requires quick access to a toilet.

3. Diet and output management tips:
- Foods like applesauce, peanut butter, cheese, potatoes, and bananas can help thicken and slow output.
- Fibre supplements like psyllium husk or Metamucil can help manage liquid output and reduce emptying frequency.
- Imodium is used by some to reduce volume and frequency, but it's important to confirm the dosage with a healthcare provider.
- Be cautious with caffeine and diuretics as they can thin output and increase dehydration risk.
- Many people tolerate vegetables well if they chew thoroughly.

4. Hydration and dehydration prevention:
- High output can lead to a loss of electrolytes, so it's important to monitor fluid intake and consider using oral rehydration salts.

5. Appliance and supply hints:
- Hollister two-piece systems with Velcro closures are recommended for easier emptying if insurance allows.
- Barrier wipes and adhesive removers can help protect the skin.
- Some users find it helpful to irrigate the pouch with a repurposed bottle and reuse bags after cleaning them.

6. Mental health and support:
- Experiencing depression and grief is normal, and support from peer forums, counseling, and open conversations with surgeons can be beneficial.
- Online communities can provide understanding and support when friends and family may not fully grasp the situation.

7. Success stories:
- One person shared their experience of having 12-15 bowel movements per day initially after reversal, which later stabilized to 5-6 per day.
- New reversal patients are advised to consider supplements like Imodium and fibre, and to gradually expand their diet.

8. Practical cautions:
- Be cautious with antibiotics, as some can trigger issues like C. diff.
- Wheelchair users should ensure bathroom accessibility to avoid dangerous rushes to the toilet.
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