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Jul 07, 2012

Living Well with an Ileostomy: My Journey and Choices

This topic is about making a decision regarding the future of an ileostomy, which is a surgical opening created to allow waste to leave the body after part of the intestine has been removed. Ed, who has an ileostomy, is considering whether to keep it as is, remove the rectal stump, or opt for a j-pouch. Here are some insights and advice shared by others in similar situations:

1. Ed's current quality of life with his ileostomy is excellent:
- He can drive for 1½ hours without needing bathroom breaks, whereas he used to stop three times.
- He can watch 90-minute movies without interruptions.
- He sleeps from 10 p.m. to 5:15 a.m. without needing to get up for the bathroom.
- He is not on any medications and has returned to a mostly normal diet, after previously avoiding caffeine, gluten, and dairy.
- He enjoys eating again, although he still misses some fruits.
- He feels healthy, is gaining weight, and appreciates the small joys his stoma has brought back to his life.
- Despite concerns about others' reactions, he acknowledges that the stoma has "given me back my life."

2. At his follow-up, Ed's surgeon confirmed that he does not need further surgery and scheduled the next review for a year later. Ed is medication-free, regaining weight, feeling good, and ready to work on his '79 Fox-body Mustang.

3. Advice from others:
- Many suggest "doing nothing" because Ed's current quality of life is high, and additional surgery could disrupt this.
- Cautions about the j-pouch include:
- It may have a lower success rate than often advertised.
- There could be post-op complications, frequent bathroom trips (8–10 times a day), leakage, "butt burn," and possible loss of more small bowel.
- Positive experiences with a permanent ileostomy include:
- Comparable or better comfort than with a j-pouch.
- Ability to swim, shower, travel long distances, wear normal clothes (including bathing suits and shorts), and enjoy hobbies like motorcycle trips.
- Generally uninterrupted sleep at night, except for occasional pouch emptying.
- Perspectives on removing the rectal stump:
- Some choose this to eliminate mucus discharge and reduce the risk of lingering ulcerative colitis.
- For a few, making the stoma permanent ended worries about a possible reversal.
- On self-image and dating: Everyone faces challenges, and the right partner will offer mutual respect and support.

4. The overall theme is to base the decision on quality of life. If things are going well, many recommend avoiding further surgery.
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