Question:
I’ve had an end ileostomy for six years and still have my rectum. Recently, I’ve been experiencing severe rectal pain and daily discharge that includes stool, mucus, and dark blood. I’m also dealing with stomach pain and cramping. It’s becoming increasingly difficult to live this way. My gastroenterologist and surgeon don’t seem to have any answers. Has anyone else experienced this, and are there any suggestions for next steps?
Answer:
I’m so sorry to hear about the symptoms you’re experiencing. That sounds incredibly difficult.
If you’re seeing rectal discharge that includes blood and stool, there may be inflammation or disease activity in your retained rectum. Here are a few suggestions to help guide your next steps:
- What was your original diagnosis that led to your ileostomy—was it cancer, inflammatory bowel disease, or something else? It’s possible that the underlying condition has returned or worsened in the remaining bowel.
- Has your surgeon or gastroenterologist done any recent diagnostic testing, such as a CT scan or MRI? If not, you should request further imaging to better understand what’s happening.
- Ask for a sigmoidoscopy or colonoscopy (scope) to investigate the rectum and lower bowel.
- If you’re not getting helpful answers, don’t hesitate to request a second opinion through your family physician.
- You can also contact your local homecare intake line. In most provinces, you do not need a doctor’s order to get a homecare nurse assessment. A nurse—ideally a NSWOC (Nurse Specialized in Wound, Ostomy, and Continence)—can come to your home to take a full history and provide a clinical assessment. This nurse can then share their findings with your doctor, who can forward them to a surgeon for follow-up.
You shouldn’t have to go through this alone, and there are options for getting additional support.
Answered by
Karen Bruton RN BScN MCISc-WH WOCC(C)
Nurse Education Consultant – Interprofessional Practice Support
Indigenous Services Canada, Government of Canada
Ostomy Canada (Volunteer)
