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41,452 members
May 16, 2016

New Member Sharing a Personal Health Journey

This topic is about adjusting to life after an emergency colostomy and finding support during this challenging time. A new member shares their experience of dealing with severe abdominal pain, weight loss, and an enlarging abdomen, which were initially misdiagnosed as a virus by two doctors. It was only after a third visit to the emergency room that an ultrasound and CT scan revealed a colon tumor, leading to emergency surgery and a colostomy. The member is now undergoing chemotherapy for adenocarcinoma. The initial days with the ostomy pouch were emotionally tough due to frequent leaks, but finding that Imodium helped thicken the output was a significant relief. While physically adjusted to the pouch, the member is still coping with the emotional aspects, including changes in marital intimacy.

Here are some pieces of advice and insights shared by others:

1. It's crucial to find doctors who will order the right diagnostic tests or refer you to specialists promptly. Early and accurate diagnosis can be life-saving and help build your confidence in your healthcare.

2. Remember, you are not alone. Many have gone through delayed diagnoses and emergency surgeries and now live with an ostomy. Sharing stories can help normalize the experience and provide encouragement.

3. Online and in-person support resources can be incredibly helpful:
- Engage in forums like MAO to connect with others.
- Check out the United Ostomy Associations of America (UOAA) website at www.ostomy.org for educational materials, local support groups, and information on national conferences.
- Conferences offer opportunities for networking, learning about products, and socializing with other ostomates and their partners.

4. Continuing hobbies and shared activities, like playing guitar or traveling, can help maintain your quality of life and strengthen relationships.

5. Imodium (loperamide) is mentioned as a product that can effectively reduce liquid output and help manage pouch filling between changes.
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