This topic is about the emotional ups and downs that can occur after living with a permanent colostomy for several years. The person sharing their experience is in their third year with a colostomy and has recently felt a surge of resentment towards their stoma. They are curious if these emotional swings are normal after having an ostomy for over two years. Here are some insights and advice shared by others who have been through similar experiences:
- Emotional and Psychological Support:
- Many people, from those who have had an ostomy for 11 months to 20 years, report feeling periodic resentment or sadness, which is completely normal.
- Comparing life with and without the stoma can help reframe negative feelings, especially by remembering how sick you were before.
- The "Five Stages of Grief" by Elisabeth Kübler-Ross can be a useful framework, as you may cycle through these stages repeatedly.
- Talk therapy, writing, and participating in online forums can be helpful when emotions become overwhelming.
- Practical Appliance Tips:
- Some users find that a specific one-piece convex pouch can last about four days and suggest gently shaking the output down to avoid pressure that might lift the wafer.
- A closed-end, low-profile pouch can be worn after morning irrigation for a flatter appearance under clothes.
- A waterproof bandage can replace a pouch for swimming after a successful irrigation session.
- It's beneficial to call manufacturers and request samples to find a product that adheres well and removes easily, as switching brands has solved leaks for several users.
- Irrigation:
- Some people have regained a sense of freedom by irrigating once daily or every other day, which can eliminate output between sessions.
- A typical routine might take about an hour in the morning, after which only a stoma cap, small closed-end pouch, or waterproof bandage is needed.
- It's important to get clearance from your surgeon or WOC nurse before starting irrigation.
- Hernias:
- Parastomal hernias are common, and some people choose to monitor them if symptoms are manageable, while others opt for repair. It's crucial to discuss the risks and benefits thoroughly with a colorectal surgeon.
- Continent Internal Pouches (BCIR / Kock):
- The BCIR is an internal reservoir made from the small intestine, allowing for control over emptying without an external pouch, just a small dressing.
- Benefits include full control over emptying and no external leaks, but it requires major surgery and has potential complications like valve slippage and pouchitis.
- It's important to conduct thorough research and consult with specialists, as these pouches are not suitable for everyone.
- General Coping Strategies:
- Accept that there will be "good stoma days" and "bad stoma days."
- Stay socially active and avoid isolation, even when leaks or worries make you want to stay home.
- Allow yourself to feel upset when it happens, then reset and move on.
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