This topic is about managing an extremely high-output ileostomy, which can be quite challenging. The person sharing their experience has been dealing with a very high volume of liquid output from their ileostomy for over eight months. This situation requires them to empty their pouch about 20 times during the day and 5 to 6 times at night, severely affecting their sleep and leading to hospitalizations and malnutrition. A gastroenterologist has prescribed Octreotide injections to help manage the output, but insurance issues have delayed the start of this treatment. The person is seeking feedback from others who might have had similar experiences with high-output ileostomies and the use of Octreotide.

Here are some insights and advice shared by others:

1. After the first supervised Octreotide injection, the person experienced severe complications, including hypovolemic shock and adrenal insufficiency, leading to an 8-day stay in the Cardiac ICU. This highlights the importance of careful monitoring when starting new treatments.

2. A CT scan revealed gas in the mesenteric vessels, intestinal lesions, ulcerations, and a small hernia. Due to the risks, the surgeon is hesitant to operate.

3. The person has a history of total colectomy with the rectum preserved, and the full length of the small bowel remains intact.

4. There is an infection in the central line, indicated by green/yellow exudate.

5. The gastroenterologist has mentioned the possibility of switching to Tincture of Opium (T of O) as an alternative treatment.

6. The person is also working on reinstating Social Security disability benefits while dealing with profound dehydration and low blood pressure.

Advice and experiences from others include:

- Some people have found success in slowing ileostomy output with Tincture of Opium. One person used it for a year and has remained stable with only minor side effects.

- Oral codeine phosphate is recommended by several people as an alternative to help manage motility. A long-term ileostomate with significant small-bowel loss takes codeine 20–30 minutes before each meal and has relied on it successfully for about 20 years.

- It is emphasized that opioid-based agents like Tincture of Opium and codeine can be more effective than Octreotide for some individuals with high-output issues. However, regular monitoring for side effects and maintaining hydration is crucial.