This topic is about preparing for and adjusting to life with a permanent ileostomy, which is a type of surgery where a pouch, often affectionately named (like "Fred"), is used to collect waste from the body. The person discussing this is already familiar with a stoma but is understandably nervous about managing a new pouch. Here’s what to expect and some helpful advice:
- Hospital stay and early recovery:
1. Many people start feeling like themselves again about six weeks after surgery.
2. If the surgery is done laparoscopically, recovery might be quicker due to smaller wounds. Open surgery or complications can extend recovery time.
3. Managing pain is crucial. Some find Fentanyl patches effective, especially if they are already using them for other conditions.
4. It's important to connect with an ET/ostomy nurse early on. They are invaluable for learning how to change the pouch and solve any issues.
- Learning pouch care:
1. Confidence in managing the pouch usually grows quickly once you’re home. Mistakes, like forgetting to close the pouch properly, can happen, so keeping a sense of humor helps.
2. Finding the right appliance system is key, especially one that your skin can tolerate. Some people react to adhesives but eventually find one that works. Avoid using hair conditioners or body lotions near the area as they can affect adhesion.
3. Skin-barrier wipes are useful for protecting the skin around the stoma, especially after stitches are removed or if the skin becomes irritated.
- Diet and output management:
1. Start with small, low-residue meals. Many people find they need to empty the pouch more at night, so stopping food intake after mid-afternoon can help with sleep.
2. As healing progresses, food tolerance usually improves. Everyone has different foods they can or cannot eat, but chocolate is often well-tolerated.
3. Staying hydrated and maintaining electrolyte levels is important because an ileostomy can lead to quick fluid and salt loss.
- Supplements, blood work, and medications:
1. Regular blood tests, ranging from every two weeks to monthly, are recommended to monitor blood and electrolyte levels.
2. Standard tablets might not be absorbed properly, so consider chewable, liquid, or dissolvable forms:
- Calcium + Vitamin D chewables
- Iron + Vitamin C chewables or liquid
- Complete Vitamin B complex (chewable/dissolvable)
- Oral electrolyte solutions
3. Always check with a pharmacist about prescription drugs. If possible, crush or split non-sustained release tablets, or look for liquid alternatives.
- Mind-set and quality of life:
1. Many people experience a significant improvement in quality of life compared to dealing with conditions like ulcerative colitis, Crohn’s, FAP, or cancer-related bowel issues.
2. Feeling scared is normal but usually temporary. Focus on the new freedom the ileostomy can provide.
3. Stay connected with the ostomy community, as sharing experiences can make the learning process easier.
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