This topic is about managing life after having an ileostomy, particularly focusing on issues like output consistency, abdominal pain, and weight loss following surgery. Here are some helpful insights and advice for those experiencing similar challenges:
- The ileostomy was created in January 2013. The output begins about 30 minutes after eating and varies in consistency from watery to thick gravy, but it is never solid.
- There is morning abdominal pain that comes and goes, with some days being pain-free.
- Before surgery, the weight was 170 pounds at a height of 5'6". The current weight is between 127 and 130 pounds, and there is difficulty regaining weight despite following a "safe" food list and staying hydrated.
- Cancer surgery was performed 8 weeks ago, and there was no need for chemotherapy or radiation. However, the weight remains unchanged.
- There is relief in knowing that quick output may be normal, but sometimes meals are avoided because of it.
- A difficult tail-bone bedsore has developed due to prolonged hospital stays.
- There is a plan to try peanut butter to help thicken the output.
Advice and insights:
1. Fluid choices:
- Sip water throughout the day, but also include calorie-dense drinks like juice, milk, or kefir instead of just large amounts of water.
2. Output consistency/thickening tips:
- Aim for an "oatmeal/porridge" texture. Most stomas empty soon after meals, so consider having earlier evening meals.
- Use starchy or gummy foods to thicken the output, such as mashed potatoes, potato chips, bananas, marshmallows, gummy bears, peanut butter (alone or with marshmallow fluff), and air-popped popcorn (avoid chemical-laden microwave varieties).
- Charcoal sachets or powders can help thicken the effluent and reduce odor.
3. Pain management:
- Intermittent abdominal pain may be due to gas. Note foods that increase gas, like whipped toppings, certain dairy products, and fibrous items, and consider making dietary adjustments.
4. Weight maintenance and gain:
- Weight loss after an ileostomy is common, and regaining weight can be challenging. However, strength can be rebuilt with activities like gardening or fence-post work.
- Consider calorie-rich, nutrient-dense options such as organic peanut, cashew, or almond butter on whole-grain toast with honey, organic fruit smoothies, milk kefir, and ice cream (if tolerated).
- Protein sources can be debated. Some find protein powders or shakes beneficial, while others are advised to avoid them. Individual medical circumstances, like additional small-intestine or pancreas loss, may affect tolerance.
- Focus on the quality of food as well as calories to aid healing.
5. General observations:
- Coffee and wine often transit rapidly and produce liquid output.
- Trial and error are essential, as tolerance to specific foods can change over time.
- Ileostomy output is typically less odorous than colostomy output.
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