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Jan 18, 2011

Seeking Advice - Endometriosis & Colostomy Challenges

This topic is about managing life after an unexpected colostomy due to endometriosis and finding suitable workwear that accommodates a stoma. The person involved had surgery to remove what was thought to be a benign colon mass, but it turned out that endometriosis had severely affected the sigmoid colon, leading to the need for a colostomy. Here are some of the main concerns and advice shared:

1. There is a fear that any remaining endometriosis might reattach to the colon during the healing process, which could affect the planned reversal surgery in six months. The person is considering whether to have a hysterectomy first or to try less aggressive hormone therapy.

2. The stoma is located at the waist level, which makes it challenging to find workwear that doesn't constrict the stoma or pouch. As a process engineer who needs to move around a plant, this is a significant concern.

Additional background information includes:
- The surgery was four weeks ago, with a reversal tentatively scheduled for six months later.
- The person has a history of two C-sections and experienced heavy, clot-filled periods four years ago due to uterine gland overgrowth, which was treated with uterine ablation.
- Occasional anal bleeding has been noted at the onset of recent periods.
- A recent CT scan showed a large fibroid.
- The person believes that endometrial cells migrated after the uterine lining was destroyed.
- They are 50 years old, have healthy teenage children, and no previous bowel disease.
- They are open to sharing progress and resources with others facing similar issues.

Advice and insights shared include:

- For clothing and workwear:
- Consider tucking the pouch inside supportive, high-rise panties and wearing soft, elastic-waist sweatpants or comfortably fitting jeans. These options sit above or stretch around the stoma without causing discomfort and are easy to manage.
- Explore protective devices like the "Ostomy Guard," which can shield a stoma positioned on the beltline from waistband pressure.

- For managing endometriosis recurrence:
- One person with recurrent, severe endometriosis, who has undergone multiple surgeries, chose to have a hysterectomy after the disease threatened other organs. By retaining a single ovary, they avoided immediate menopause. This person reports that the hysterectomy stopped further flare-ups and suggests considering this option when endometriosis has already affected the bowel.
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