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Jan 15, 2016

Struggling with Colostomy - Need Support & Advice

This topic is about someone who is two months into their recovery after having a colostomy. They are facing both physical and emotional challenges as they adjust to life with a stoma. Before the surgery, they dealt with a near-complete bowel obstruction and significant weight loss. Now, their recovery is uneven, with some days feeling normal and others filled with discomfort and pain. Sleep is difficult due to worry and stoma activity at night. A painful bulge near the stoma, which was not identified as a hernia, adds to their concerns. As a professional musician, they are anxious about returning to work and fear for their career. They are also struggling with body image, confusion over ostomy products, and a lack of guidance from their doctor. They are seeking practical advice and emotional support to help them through this challenging time.

Here are some helpful insights and advice:

1. Healing timetable and expectations:
- Understand that two months is still early in the recovery process. Full healing, both physically and emotionally, can take many months.
- Swelling and changes in the abdomen can continue. Consider getting a second opinion from a medical professional and an assessment from an ostomy nurse, especially regarding the possibility of a hernia.

2. Pain, constipation, and medication management:
- Be aware that Percocet can cause constipation, so it might be helpful to use a stool softener alongside it.
- Address pain and anxiety separately. Seeking support from a mental health professional can help with body image issues and overall adjustment.

3. Product trial and pouching tips:
- Experiment with different brands and styles until you find one that works for you. Many companies offer free samples.
- Some have found success with the Coloplast Extra Convex Light one-piece system to resolve leaks and skin pain.
- When returning to work, always carry spare pouches, wafers, and a change of clothes.

4. Irrigation (specific to colostomies):
- Some people find irrigation to be a game-changer, providing predictable output and reducing leakage and supply costs. It takes about 30–60 minutes per session, daily or every other day.
- Watch YouTube demonstrations and consider trying it after the eight-week mark if your doctor approves.
- While not mandatory, it is worth considering as an alternative to conventional pouching.

5. Emotional and psychological coping:
- Anxiety can worsen physical symptoms, so counseling or seeing a psychologist experienced with medical trauma can be beneficial.
- Take small steps, set achievable goals, celebrate progress, and give yourself time.
- Watching videos of children living well with ostomies and reading memoirs or books like "Stanley and Me Make Three" can provide inspiration and hope.

6. Physical recovery and prevention:
- Engage in gradual physical therapy to rebuild core strength and reduce the risk of hernias. Wear support garments if recommended.

7. Education and community resources:
- The United Ostomy Association of America (UOAA.org) offers helpful articles, supplier links, and information about regional ostomy conferences.
- Local ostomy support groups and online forums can provide product advice, technique tutorials, and peer encouragement.

8. General outlook:
- Many people report significant improvements in their quality of life after finding the right pouch or irrigation routine.
- Keep hope alive; many who once felt despair now lead active and fulfilling lives.
See full discusison
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