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Nov 22, 2023

Developed a Fistula Around My Stoma - Seeking Advice

This topic is about a person who recently had ileostomy surgery and is experiencing some complications. They have developed a fistula at the site where the stoma meets the skin, which is causing fecal matter to leak outside the stoma. They are also experiencing symptoms like feeling hot and cold, general weakness, and are worried about a serious infection called peritonitis. Despite being on antibiotics, their symptoms are not improving. Here are some pieces of advice and insights shared by others:

1. Seek immediate medical attention. It's crucial to see a surgeon, a Wound, Ostomy, and Continence (WOC) nurse, or go to the emergency room. Symptoms like chills, fever, weakness, and external fecal leaks can indicate an uncontrolled infection or the beginning of sepsis.

2. Consider different or stronger antibiotics. Some people have needed multiple antibiotics, and sometimes an antifungal, to resolve their infection. If current medications aren't working, it's important to have them re-evaluated and possibly choose drugs based on culture results.

3. Get a second opinion if the first doctor downplays the issue. Fistulas are not normal after surgery, and ignoring them can lead to serious complications.

4. Look for online resources about fistulas. There are blogs and resources run by experienced patients that can offer management strategies.

5. Manage appliance challenges in the meantime:
- Fistulas can make it difficult to cut the wafer correctly, leading to leaks and skin irritation.
- Frequent changes of the appliance and careful skin care are necessary until the issue is resolved.

6. Personal experiences shared:
- One person with Crohn’s disease and a history of bowel perforation developed multiple fistulas, including after receiving a TIES implant device. Staying proactive with their care team helped manage complications.
- Another person with a recent stomal fistula is managing by adjusting wafer cuts while waiting for planned reversal surgery.

7. A critical warning: Untreated infections can quickly lead to peritonitis or sepsis, which are potentially life-threatening, so timely action is essential.
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