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41,453 members
Nov 16, 2013

Life???

This topic is about adjusting to life with a new ileostomy, especially at the age of 79. The person who shared their experience is dealing with fear, leaks, and depression after receiving an ileostomy in February. An early incident where the pouch came loose in public has led to severe anxiety about leaving home and has worsened existing depression. Although a stoma nurse has helped with a more reliable appliance, there is still fear about eating out, uncertainty about dietary choices, and a feeling that life enjoyment is slipping away. The person was very active and independent before, having retired at 70 to care for a now-deceased spouse, and is struggling to accept this permanent change while experiencing intense loneliness.

Here are some pieces of advice and insights shared by others:

1. Give it time and take small steps.
- Many have experienced similar early accidents and fears. Healing, mastering the appliance, and gaining confidence usually take months, not weeks.
- Celebrate each success, like leaving a restaurant unnoticed, and don’t compare your progress to others.

2. Carry an emergency kit whenever you go out.
- Common items include a spare pouch, wafer, stoma powder, tape, towel, wipes, plastic bag, and a change of underwear or slacks.
- Many keep everything in a backpack, handbag, or “nappy bag”; teachers find a backpack blends in at work.

3. Recommended products and gear.
- The Hollister 8624 one-piece drainable pouch is often praised for its leak security.
- “Silhouette” protective underwear (Depend brand style) adds backup confidence.
- Some wear pantyhose or a second cover/ostomy wrap to keep the pouch flat and supported, especially in crowds or when seated.

4. Diet realities.
- Most cannot “eat anything.” Be cautious with corn, popcorn, high-fiber skins, gassy foods, carbonated drinks, and excess sweets.
- One person safely enjoys air-popped popcorn by eating only the soft parts.
- Introduce new foods slowly and assess personal tolerances; balance the pleasure level against the risk of obstruction, gas, or leaks.

5. Leak and pancaking tips.
- Use stoma powder or barrier rings to improve the seal.
- Change immediately if you feel the wafer lifting; many have discreetly left events to do so.
- High heat and humidity can loosen adhesive; extra tape or a fresh bag may be needed sooner in hot weather.

6. Emotional and mental health support.
- Consider professional therapy; several have benefited from psychologists, grief counselors, or short-term psychiatric hospitalization.
- Medication for depression and/or anxiety helped some regain control.
- “Portion your grief”: set a brief daily time to mourn or vent, then purposefully shift to a small task or pleasant activity.

7. Peer and faith resources.
- Join local hospital-based or online ostomy support groups; if none exist, ask the hospital to help start one.
- Spiritual materials, like books and daily web messages, have provided comfort and humor to some.

8. Stay socially engaged and active.
- Volunteer, pursue hobbies, take short walks, garden, cook, or have video calls with family.
- Sit on an aisle at events for easy restroom access; don’t let fear block time with grandchildren.

9. Mindset tactics.
- Laugh at mishaps where possible; many shared embarrassing leakage stories that later became family humor.
- Remember that countless people live normal public lives with hidden ostomies.
- Reach out to fellow ostomates for one-on-one chats; several offered private messaging or coffee meetings.
See full discusison
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