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41,406 members
Mar 26, 2011

Scared of Future Surgeries - Need Support

This topic is about someone who recently had a challenging experience with surgery for ulcerative colitis and is now dealing with the fear of future surgeries. After a complicated colectomy, they are recovering physically but are emotionally shaken and worried about what comes next. They are considering whether to proceed with a planned J-pouch surgery or to stay with a permanent ileostomy. Here are some pieces of advice and insights that might be helpful:

1. Look for the most experienced colorectal surgeon you can find. Check their experience and success rates before deciding on any further surgery.

2. If you have doubts about your current medical team, consider getting a second or even third opinion. Many people have switched surgeons until they found one they felt comfortable with.

3. Try not to let the previous complication scare you away from necessary procedures. The aortic issue was separate, and with good surgical planning, future risks can be minimized.

4. A permanent ileostomy can be a stable and complication-free alternative to a J-pouch. Many people live normal lives with an ostomy, while some with J-pouches may need additional surgeries.

5. If the retained rectum is causing issues like inflammation or bleeding, discuss with your doctor the pros and cons of removing it versus managing it with medication.

6. Recovery, both physically and emotionally, can take longer than expected. It's normal to have days where you feel down. Allow yourself to grieve and seek support when needed.

7. Anesthetics and significant blood loss can lead to mood swings after surgery. It's common to have crying spells, but these usually decrease over time.

8. Keep learning by talking to other patients, checking reliable resources, and preparing questions for your medical appointments.

9. Using humor and naming your ostomy appliance can help make life with a bag feel more normal. Treating care routines as second nature can also help.

10. Stay positive and focus on problem-solving. Celebrate the support of your partner and small steps in your healing journey while you make longer-term decisions.
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