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Feb 21, 2018

Seeking Support and Advice for Ostomy Reversal

This topic is about someone preparing for an ostomy reversal after having a temporary colostomy due to colon cancer. The person is seeking support and experiences from others who have gone through similar situations. Here are some key points and advice shared:

- The individual was diagnosed with colon cancer and had surgery that resulted in a temporary colostomy. They completed chemotherapy and are now scheduled for a reversal soon. While life with the pouch has been manageable, they feel self-conscious about potential odor or leaks and wish to return to a sense of normalcy.

- Concerns have arisen about undergoing another surgery just as life feels stable, potential postoperative complications like leakage or the need for additional surgery, and the recovery process, which might involve loose stools and frequent bathroom visits.

- The surgeon has found that there is enough rectum left for reconnection, with no radiation damage, and a sigmoidoscopy showed encouraging results. However, the person is worried about stool leakage into the abdomen, very loose or frequent bowel movements, and whether keeping the current colostomy might be easier.

- The surgery date is set, but the decision can still be changed if confidence wavers.

Advice and insights from others include:

1. Every reversal outcome is unique, so while it's helpful to hear others' stories, decisions should be based on personal priorities and medical specifics.

2. The length and condition of the remaining large intestine are crucial. Less colon often means looser, more acidic output and more frequent bathroom visits.

3. It's important to ask the surgeon detailed questions, including why a secondary ileostomy might be necessary, and to insist on scope or scan assessments to evaluate the rectal stump and overall healing potential before proceeding.

4. The absence of radiation damage is a positive factor for success.

5. Expect an adjustment period after reconnection, which might include temporary diaper use, nighttime leakage, and experimenting with diet. Over-the-counter anti-diarrheals like Gastro-stop or Imodium (loperamide) can help thicken output and reduce frequency.

6. Factors like age, low body fat, and good bloodwork are linked to smoother surgical recovery.

7. There are successful J-pouch stories, with typical patterns of 4–6 bowel movements per day, occasional nocturnal leakage managed with pads, and steady improvement over the first months.

8. Be prepared for the possibility of failure, as reconnection can sometimes leak and require another ileostomy.

9. Some people choose to keep their ostomy permanently because it resolves previous incontinence or pain and can be simplified by irrigation, eliminating the need for a daytime pouch.

10. Psychological readiness is important. It's essential to acknowledge fear but also consider quality-of-life goals. Deciding between "not trying" and "trying and possibly reverting" is a personal choice weighing risk and peace of mind.

11. Staying connected with others undergoing reversal can provide practical recovery insights and moral support. Real-time accounts from peers scheduled around the same time can be particularly helpful.
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