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Jan 19, 2024

Am I Truly Getting an Ileostomy? Confused About My Surgery

This topic is about understanding the differences between an ileostomy and a jejunostomy, especially in the context of a first surgery for someone with Crohn’s disease. A 39-year-old patient with a long history of Crohn’s is preparing for surgery due to a partial small-bowel obstruction. The surgical plan involves creating an ileostomy to allow the bowel to rest and possibly performing a small-bowel resection, depending on the condition of the intestines. The patient is confused because most of the strictures are in the duodenum and jejunum, and they wonder if a jejunostomy would be more appropriate. They plan to discuss this with their surgeon but are seeking quick advice from others.

Here are some helpful insights and advice:

1. After consulting with the hospital's gastroenterology team, it was clarified that although there are many strictures in the duodenum and jejunum, they are not severe. The most significant disease is in the terminal ileum, making an ileostomy the right choice.

2. The patient has had Crohn’s disease since age 14 and has not had surgery before. Despite trying various treatments, the condition has worsened over time. The surgical team is hopeful about reversing the ileostomy in the future.

3. It is important to keep both primary-care and gastroenterology providers involved in the process. While surgeons handle the technical aspects of the operation, medical teams focus on managing the overall disease.

4. Write down any concerns and ask specific questions whenever you have the chance to speak with healthcare providers.

5. Be your own advocate. Make sure you get clear explanations about the terminology, details of the procedure, and what to expect regarding the reversal.

6. Understand that reversing an ileostomy can come with complications and may not completely restore normal digestion. It’s important to manage your expectations.

7. Remember that there is a supportive community ready to offer encouragement and help after surgery.
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