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Jun 28, 2016

Desperate for Answers - Chronic Pain After Eating, No Diagnosis

This topic is about someone experiencing severe abdominal and stoma pain after eating or drinking, which has led to significant weight loss and a suspicion of adhesions or a partial blockage in the intestines. Despite multiple hospital visits and tests, the cause of the pain remains unclear, and the person is seeking advice and insights on how to manage their condition.

- For the past year, the individual has been dealing with intense abdominal and stoma pain 1-2 hours after consuming any food or drink, resulting in a 65-pound weight loss.
- They have been hospitalized twice, with extensive testing showing no clear cause, and were discharged with pain medication and dietary instructions.
- During a recent ER visit, an X-ray showed a significant amount of stool, despite a diet limited to yogurt, lactose-free milk, and Gastrolyte for 12 days. The stoma output was minimal, with undigested food from meals eaten 10 days prior.
- They were given Diovol for gas, which caused watery output, and Lactulose for presumed constipation, but were sent home before seeing if these treatments worked.
- Lactulose did not help, and the pain worsened, accompanied by bladder pressure, nausea, and severe fatigue, leading to days spent in bed with a heating pad.
- The individual suspects that intra-abdominal adhesions or a partial obstruction is being overlooked, as the pain is severe and not relieved by opioids.

Additional information includes:

- Hospital teams have reviewed tests, but the last ER discharge happened without a new GI consultation.
- They are waiting for a referral to a GI specialist in London, Ontario, but transportation is challenging due to their condition.
- Previous imaging tests mostly showed no stool, yet the pain continued. The latest test showed a heavy stool burden despite not eating solid food for over 12 days. Ensure causes extreme gas.
- They have read that adhesions often do not appear on imaging and are willing to consider exploratory surgery despite the risk of creating more adhesions.
- A new GI appointment is scheduled for the end of July, with hopes for a surgical referral. They are currently taking Dulcolax and Lactulose, eating only easily digestible foods, and experiencing intense bladder pressure and back pain. Walking is difficult, and another ER visit may be necessary if symptoms worsen.

Advice and insights offered include:

1. Re-contact or change the GI specialist and clearly communicate the severity of the condition and the inability to eat.
2. Consider seeking a second or third opinion from a different hospital or health system if possible.
3. Request an abdominal CT with enterography (CTE) or other advanced imaging to check for strictures, adhesions, kinks, or partial obstructions, as X-rays alone may not be sufficient.
4. Understand that imaging can miss a mechanical blockage, and persistent symptoms with weight loss and vomiting might require exploratory surgery, as others have needed surgery despite normal scans.
5. Keep calling the new GI office to ask for an earlier appointment if there are cancellations.
6. Document the ineffectiveness of laxatives (Lactulose, Dulcolax) and gas relief (Diovol) to show the urgency of the situation.
7. Continue with a minimal-residue diet only if it is tolerated, and be ready to return to the ER immediately if signs of a complete blockage appear.
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