This topic is about someone who has been dealing with ulcerative colitis for seven years and is now preparing for a total proctocolectomy, which means having their colon, rectum, and anus removed. This will result in a permanent ostomy. The decision for surgery comes after medications have failed and due to concerns about cancer risk. The person is looking forward to improving their quality of life and is seeking positive and practical advice on adjusting to life with an ostomy, including staying active and returning to work. They also have a light-hearted approach, even considering naming their stoma.
Here are some helpful insights and advice:
1. Pre-Operation:
- Bring someone with you to all surgical consultations to help remember the information.
- Ask your surgeon detailed questions about the surgery and recovery, including expected operation time, post-op support, pain management, and dietary plans.
- Understand why the rectum and anus are being removed in the same surgery.
- Request initial supplies like cushions and a walker before leaving the hospital.
- If you have a colostomy, ask to be trained in colostomy irrigation.
2. Early Recovery:
- Be prepared for significant pain and the sensation of needing to go, which will gradually decrease.
- Liquid output and frequent emptying may continue for months; anti-diarrheals can help.
- Maintain a soft diet and avoid foods that can block the stoma.
- Start walking as soon as possible to aid healing.
- Use anti-pressure cushions when sitting, as it may take months to sit comfortably.
3. Pouching and Products:
- Hospital pouches are basic; explore different systems to find what works best for you.
- Consider different types of bags based on the consistency of your output.
- Change your pouching system regularly, with frequency depending on your type of ostomy.
- Request free samples from manufacturers to try different options.
- For colostomates, morning irrigation can reduce the need for a bag during the day.
4. Emotional and Practical Support:
- Join a local ostomy support group to connect with others who have similar experiences.
- Naming your stoma and keeping a sense of humor can help with adaptation.
- Accept that some days will be challenging, but remember that life can improve after colitis.
- Utilize home-health and ostomy nurses for support, and arrange visits early if they are scarce in your area.
5. Long-Term Outlook:
- Many people return to full activity, including work and exercise, within a few months.
- With a well-managed routine, living with an ostomy can become a normal part of life.
- Continue to be vigilant with your diet and hydration to avoid bowel obstructions.
Medications mentioned include hydrocodone and Vicodin 7.5 for post-op pain, and Remicade, which was declined in favor of surgery.
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