This topic is about understanding how to detect Crohn’s disease flares in the small bowel after having a total colectomy, and exploring imaging options to help with this. The person sharing their experience has been living with Crohn’s disease for 11 years and has faced numerous challenges and complications following their surgery. Here are some key points and advice shared:

- The individual experiences frequent pouch empties, leading to severe fluid loss, and has faced several health issues such as adrenal insufficiency, septic pneumonia, and hypovolemic shock. They also manage kidney bleeding with daily IV hydration and have undergone multiple surgeries.

- They are concerned about how to detect Crohn’s flares without a colon, as traditional methods like colonoscopy are limited in visualizing the small bowel.

- There is interest in using capsule endoscopy (pill-cam) with an ileostomy, but they are unsure if it is possible.

- They express frustration with their current gastroenterologist, who dismisses their pain as scar tissue and suggests psychiatric help instead of further GI investigation.

- They are seeking a second opinion at UCLA and have an upcoming appointment to check for a suspected hernia and Crohn’s lesions near the stoma.

- They have learned that capsule endoscopy might be possible with an ileostomy if a dummy capsule is used first to ensure it can pass through any strictures.

- They are planning an ER visit for a suspected flare and are managing a complex medical regimen, including 23 medications and daily IVs, while being mostly bedridden.

Advice and insights from others include:

1. Finding a new gastroenterologist, ideally one with experience in inflammatory bowel disease (IBD) or a team at a teaching hospital that can provide urgent care.

2. Seeking second opinions, especially if a doctor dismisses symptoms as insignificant or merely scar tissue.

3. Exploring small-bowel evaluation options such as:
- Capsule endoscopy after using a patency or dummy capsule to check for strictures.
- Deep enteroscopy, which can be done through the stoma or orally, as some have successfully experienced.

4. Continuing to research and insist on proper imaging and care, and finding support through groups and peers who can validate symptoms when they feel minimized by healthcare providers.