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Jul 15, 2016

Update on my new colostomy - Overcoming challenges and finding support

This topic is about someone adjusting to life with a new colostomy, dealing with leaks, and considering the possibility of a future reversal. Here’s a look at their journey and some helpful insights they’ve shared:

- The person had an emergency colostomy due to perforated diverticulosis. Initially, they experienced severe depression and fear, but found comfort in reading about others' experiences.

- A major challenge was persistent leaking, which was resolved with the help of a visiting nurse and the person’s engineer husband. They discovered that a recessed stoma required a convex flange. They used Hollister/Ken paste, applying it in two matching rings—one around the stoma and one on the flange—so they would fuse together. They change the complete barrier on Mondays and Fridays, and the pouch only on Wednesdays.

- An incision infection has cleared up, but it still drains. Taking warm showers twice a day helps with healing and provides a moment for meditation or singing.

- Fatigue and de-conditioning have limited their activity, making even a walk in the mall require a two-hour nap afterward.

- They unintentionally lost 25 pounds, which led to stopping two blood-pressure medications.

- They are preparing for their first colonoscopy in two weeks as a pre-reversal assessment, with a possible reversal surgery later. They remain optimistic but realistic after reading about mixed outcomes.

- Emotionally, they have progressed from feeling like it was a nightmare to a state of acceptance.

Additional insights and advice include:

- Practical solutions often come from an engineering mindset. Simple fixes like using convex flanges and double-ring paste can effectively stop leaks.

- Emotional and psychological adaptation is a separate journey. Sharing successes can help others who might only see negative outcomes online.

- When considering a reversal, remember that not all takedowns are problematic. Many people with smooth recoveries stop posting online, which can skew perceptions.

- Consider whether a reversal will truly address the original disease process.

- Acceptance of life with a stoma can reduce the pressure to pursue further surgery. It’s important to weigh the quality of life with and without the appliance.

- Staying positive and informed helps make any outcome easier to accept.

- Regaining strength can take a long time, with some people reporting up to two years before feeling fully normal again.

- Warm weather can increase fatigue and dehydration, so it’s important to monitor fluid intake carefully, especially on hot days or when activity levels increase.
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