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41,428 members
Jul 01, 2009

Connecting with Others Who Have Ulcerative Colitis

This topic is about someone who has been living with ulcerative colitis and recently went through the first stage of J-pouch surgery, resulting in a temporary ileostomy. They are reaching out to connect with others who have similar experiences with ostomies or inflammatory bowel disease. Here are some helpful pieces of advice and insights shared by others:

1. Community support
- Many people encourage reaching out with any questions, whether publicly or privately, and highlight that the forum is a welcoming place to share both practical and emotional concerns.
- Some members offer an open invitation to chat anytime, emphasizing that life with an ostomy becomes easier with support from peers.

2. Product experiences and wear-time tips
- One user has been using a Convatec one-piece pouch since leaving the hospital, changing it every 4–7 days. Their routine includes using adhesive remover, a skin-prep wipe, cutting the wafer to size, applying it, and adding the original plastic clip.
- Hollister products are praised for their flexible wafer that stays secure. The Hollister 15024 two-piece system can last up to 17 hours when mostly sedentary, performing best with two wax rings, stoma paste, and in cooler weather. The Hollister 3228 one-piece drainable pouch is changed once daily by another long-term user.
- Finding the right appliance is a personal journey, and trial and error is normal.

3. Everyday living adjustments
- Casual clothing often hides the pouch well, though some wardrobe adjustments might be necessary.
- Activities like bending, twisting, and being in hot conditions can reduce wear time, with one user changing their pouch up to three times a day.
- Using humor, such as nicknames like “diaper” or “airbag,” can lighten the mood and make discussions easier, especially with children.

4. Diet and symptom management
- Spicy foods can cause severe burning for some people with an ileostomy and are best limited or avoided.
- After a colectomy, many regain the ability to eat a wider variety of foods, which is seen as a significant benefit of the surgery.

5. Mind-set and motivation
- A positive outlook is encouraged, with reminders that life is different but still good, and that "any day above ground is better than the alternative."
- A poem and several pep talks offer encouragement, reminding newcomers that challenges can be overcome with determination and gratitude.
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