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Aug 01, 2012

Recurring Crohn's after ileostomy - Diagnosis and treatment?

This topic is about the possibility of Crohn's disease returning after someone has had an ileostomy, how doctors diagnose it, and what treatments people have found helpful.

- After living with an ileostomy for 32 years, the person who started the discussion is experiencing symptoms that their doctor thinks might be an ulcer, gastritis, or a return of Crohn’s disease. They are curious if anyone has used capsule endoscopy, which is a small pill that takes pictures, for diagnosis.

- Crohn’s disease can indeed come back after an ileostomy. Some people have had to undergo multiple surgeries and even change the location of their stoma due to returning strictures or inflammation.

- For diagnosis and monitoring, gastroenterologists might use capsule endoscopy to get a better look at the small bowel, especially when other scopes and imaging tests don’t provide clear answers.

- In terms of medical treatments, people have shared their experiences with different therapies:
1. Biologic infusions like Remicade (infliximab) have helped some, with the first infusion providing relief for about three months and later infusions lasting around six weeks.
2. Biologic injections such as Humira (adalimumab) have been tried by several people, with mixed results.
3. Corticosteroids like Prednisone are used during flare-ups and to help induce remission.
4. Antibiotics and anti-inflammatories, such as Flagyl (metronidazole), have been prescribed for some.
5. Many find that trial-and-error is necessary, as side effects can limit treatment options.

- Lifestyle and diet changes have also been beneficial for some:
1. Identifying and avoiding personal trigger foods is important; while some can eat anything, others need to follow restricted diets.
2. Managing stress is crucial, as flares often occur after stressful periods.
3. Supplements like fish-oil capsules, garlic, and increasing fish and fresh fruit intake have been credited by some for longer periods of remission.

- From a surgical perspective, while recurrence is possible, many find living with an ostomy easier than undergoing repeated reversals. Long remissions are possible, with one person reporting 18 symptom-free years after surgery.

- Overall, there is no single cure. A combination of medical treatments, lifestyle adjustments, and, when necessary, additional surgery is the current approach.
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