Preparing for a total colectomy and the formation of a new ileostomy can be a big step, especially after dealing with Crohn’s or Ulcerative Colitis for many years. Here’s a friendly guide to help you know what to expect and some practical tips to make the journey smoother.

- Preparation and Hospital Stay
- Look into your surgeon’s experience with stoma creation and their success rates.
- Make sure your stoma is marked properly before surgery in different positions like sitting, standing, and bending.
- In the U.S., hospitals often use an epidural for pain and a nasogastric tube for a few days, though some places skip the tube for straight ileostomies.
- You might not be able to shower for about a week, so sponge baths will be your friend. Bring a tablet and charger to keep entertained.

- Leakage and Skin Care
- A stoma that protrudes about half to one inch can help reduce leaks. A skilled nurse is essential.
- Convex barriers are helpful once the swelling goes down.
- Some brands that people find reliable include Hollister, Coloplast, ConvaTec, and Eakin rings.
- If filters let gas or odor escape, cover them with tape.
- Keep extra supplies at home; leaks happen but are usually rare.
- Chew your food well to prevent blockages and carry marshmallows to slow output during changes.
- Expect some skin irritation and plan a follow-up with a nurse.

- Supplies and Ordering
- Try different products first; hospital nurses can help you get trial kits.
- Some recommended suppliers are McKesson, Edgepark, and Byram Healthcare.

- Rectal Stump or "Barbie-Butt" Issues
- If your rectum is removed, there’s no discharge. With a rectal stump, small amounts of mucus or blood are normal.
- Large bowel movements are unusual.

- Diet and Hydration
- Your diet will start with clear liquids and gradually return to normal.
- Avoid foods like nuts and seeds initially, then reintroduce them slowly while keeping a food diary.
- Some people can eat everything eventually, but chewing well is key to avoiding obstructions.

- Exercise and Hernia Prevention
- Walking starts in the hospital, but avoid heavy lifting for 6-8 weeks.
- More intense exercise can resume in 2-6 months, depending on your healing.
- Consider support options like hernia belts or compression shirts.

- Clothing, Lingerie, and Swimwear
- High-waisted briefs and camisoles can help cover and smooth the pouch.
- Special garments like OstomySecrets wraps or one-piece swimsuits can boost confidence.
- Check online resources for more inspiration.

- Miscellaneous Practical Tips
- Marshmallows or loperamide can help slow output before changing your pouch.
- Compression shirts can provide support and reduce sweat.
- Keep spare clothes and a change kit handy until you feel more confident.
- Bring your own entertainment to the hospital, as daytime TV can be dull.