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Feb 10, 2023

Adjusting to Life with a New Ileostomy

Adjusting to life with a new ileostomy can be quite a journey, especially after undergoing surgery for ulcerative colitis. One person shared their experience three weeks after a laparoscopic colectomy and ileostomy, highlighting a surprisingly smooth recovery. Here are some key points and advice from their story:

- They experienced a 20-pound weight loss in the first week, had minimal pain, and managed to avoid a nasogastric (NG) tube despite vomiting for two days.
- Their ileostomy output has been a thick paste, requiring them to empty the pouch only twice a day and never at night, indicating good fluid absorption.
- Initially fearful of eating, they now enjoy a wide variety of foods, including fast food and ice cream, while avoiding high-fiber items.
- They are curious about returning to weight training, wondering if their strong core before surgery will allow them to resume quickly or if they need to start from scratch.
- They share their story to encourage others who might find online information daunting.

Additional insights from their later updates include:

1. They managed to consume 2,500 calories in one day and keep track of their food intake in a journal.
2. They are eager to reintroduce fruits and vegetables into their diet but find the extra chewing tiring.
3. Their main recovery goal is to resume their weight-training routine, hoping their prior abdominal strength will be beneficial.
4. They have a strong dislike and fear of NG tubes due to previous failed placement attempts.
5. They believe in testing personal limits to learn what foods and activities are safe, while still being very careful.
6. They accept that life with an ostomy can be challenging but is still an improvement over life before surgery.

Advice and insights from others in the community include:

- A positive attitude can greatly aid in adjusting to life with an ileostomy, and eventually, almost any food becomes possible.
- Chew food thoroughly and eat slowly to prevent blockages, especially with foods like popcorn, nuts, corn, and large salads.
- Keep a food journal when trying new foods and introduce high-fiber items cautiously.
- Stay hydrated by drinking at least 2 quarts (about 2 liters) of water daily, preferably with electrolytes.
- A paste-like output is normal, and thicker outputs can occur with certain foods like potatoes and salads.
- Start with gentle abdominal exercises and progress slowly to prevent hernias, considering a support garment if needed.
- Rapid weight loss post-surgery is common, but appetite usually normalizes over time.
- Opinions on NG tubes vary; some avoid them, while others find them helpful for relieving bile backup.
- An enterostomal therapy nurse can be a valuable resource for any concerns about pouching, diet, or exercise.
- Community support is crucial, and many find forums to be a great source of encouragement and advice.
See full discusison
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