This topic is about a person who has been living with Crohn’s disease for 17 years and is dealing with a complex medical situation involving a fistula that extends to the uterus after having an ileostomy, a pelvic abscess, and a history of Crohn’s disease. Here’s a breakdown of the situation and some advice and insights shared by others:

- The individual had surgery in March 2009, which resulted in an ileostomy. During this time, a recto-vaginal fistula developed. Although external fistulas had previously closed while on Remicade, the patient was on Humira during the surgery. Pathology later found anal cancer in the vagina and fistula tract, likely due to chronic inflammation and immunosuppression from Humira. After undergoing chemo-radiation, the cancer was considered resolved.

- Nine months later, severe back pain led to the discovery of a large pelvic abscess. A drain was placed for four weeks, but the abscess returned, now twice its original size. Current symptoms include worsening back pain, vaginal discharge, and heavy pus and blood leakage from the former drain site. A CT scan now suggests a possible fistula tract reaching the uterus. The patient is on antibiotics and is scheduled for another drain.

- The patient is seeking advice on what treatment should follow additional drainage and whether Crohn’s medication should be restarted, even though imaging shows no active bowel disease. The gastroenterologist believes Crohn’s is inactive, while the colorectal surgeon and interventional radiologist suspect Crohn’s involvement.

Advice and insights from others include:

1. People with long-standing recto-vaginal or ano-rectal fistulas often face stubborn issues, and surgical repair attempts may be multiple and ongoing. Reading personal blogs of others with complex fistulas can provide practical coping ideas and emotional support.

2. One person shared that their fistula was drained and lightly sutured. They emphasize the importance of seeking prompt medical attention for severe pain and recommend confirming any medication, especially steroids like prednisone, with the treating physician before use.

3. It’s important to be aware that chronic fistulas can progress and, in some cases, lead to permanent diversion surgery, such as a colostomy, especially in older patients. Treatment approaches may vary based on the patient’s age and overall health.

4. General encouragement includes keeping the surgical and GI teams updated on any changes in symptoms, pursuing specialist opinions, and sharing outcomes to help others with rare fistula presentations.