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Apr 26, 2017

Tips for Total Colectomy with Ileostomy?

This topic is about preparing for a planned total colectomy with a permanent ileostomy. The person sharing their experience has dealt with severe colonic inertia and pelvic-floor failure for 16 years and is looking for practical advice on surgery, recovery, daily life, products, and emotional adjustment. Here are some helpful tips and insights:

- Hospital & Early Recovery
1. Having a planned surgery allows you to prepare both your supplies and your mindset, which is quite different from unexpectedly waking up with a stoma.
2. The bowel clean-out prep and the first week after surgery, which includes being NPO (nothing by mouth), having an NG tube, a large stoma, and no showers, are often the toughest parts. Expect your stoma size to change quickly as swelling goes down.
3. Abdominal incisions can take 4 to 6 months or more to heal. Follow the wound-care nurse's protocols, which may include using a cleanser, hydrogel or collagen, gauze packing, and daily dressing changes.
4. Arrange for follow-up or home-health visits with a certified ostomy/wound (ET) nurse. They often provide more practical advice than the surgeon on diet, appliance fitting, exercise limits, and skin care.

- Pre-Surgical Preparation
1. Have an ostomy/wound nurse mark the stoma site while you are standing, sitting, and bending to avoid waistbands, seatbelts, and skin folds.
2. Ask your surgeon for a stoma that protrudes at least 1 inch to ensure it drains cleanly and protects your skin.
3. Get full blood work done and ensure your albumin/protein levels are normal, as adequate protein significantly improves healing and reduces the risk of infection or sepsis.

- Product Selection & Samples
1. Order free samples from all major manufacturers to find what works best for your body.
2. Some people prefer one-piece drainable pouches, while others like two-piece systems for flexibility and easier pouch changes.
3. Specific products mentioned include Coloplast two-piece deep convex wafer/flange, and suppliers like Byram Health Care are noted for strong customer service.
4. Expect occasional leaks or appliance failures. Report any defects, as manufacturers often replace products with extra samples.

- Skin & Appliance Management
1. Cut the wafer to match your stoma size with each change, as it will shrink over the first few weeks.
2. Change a typical appliance every 3 to 4 days, or sooner if using a two-piece system and you want a fresh pouch.
3. Convex wafers or deep-convex options can help if your stoma retracts when sitting or bending.
4. Keep spare pouches, wipes, and clothing with you. Accidents happen but become rare as you learn your routine.

- Diet, Hydration & Obstruction Prevention
1. Chew all food thoroughly, as poorly-chewed fibrous items like peanuts or pineapple can cause painful blockages.
2. Ileostomies usually produce mostly liquid output, so monitor your hydration and electrolyte intake.
3. Keep a food diary to track which foods thicken or thin your output.
4. Carry loperamide (Imodium) for occasional use when you need to slow output, such as during long travel, but not for daily use.

- Lifestyle & Emotional Adjustment
1. Most people return to work within 7 weeks to 2 months and gradually rebuild their strength.
2. Leaks, gas balloons, or pouch "blowouts" may feel catastrophic at first but are manageable with practice, which helps reduce anxiety.
3. The pouch is usually invisible under normal clothing, and your confidence will grow as you test different outfits.
4. Expect a mental and emotional "mourning" period. Acknowledge it, seek support groups or counseling, and remember that the surgery often leads to a pain-free, medication-free life.
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