Nearly Two Years Battling an Undiagnosed Illness with Ongoing Symptoms
30-year-old male from Canada. For almost two years now, I have been grappling with a perplexing illness that has rendered me unable to eat food without experiencing severe abdominal discomfort, nausea, and vomiting. The pain typically initiates around my belly button, often shifting to the left side or the opposite direction. During particularly intense episodes, I can feel discomfort in both areas, and at times, it radiates upward toward my stomach and even into my chest. The nature of the pain varies, but commonly includes throbbing, squeezing sensations, deep burning, and cramping, often accompanied by debilitating headaches and tremors. These episodes leave me in a fetal position for hours, struggling to breathe and trying desperately to remain still. Any movement, conversations, odors, or sounds exacerbate my nausea and pain, prompting quicker bouts of vomiting. At the moment, I am recovering from an episode that lasted approximately six hours. Despite countless medications and extensive tests, including all offered procedures except for an endoscopy, nothing has effectively alleviated my symptoms. My medical team, comprised of various doctors and specialists, seems uncertain about my situation and is reluctant to pursue further options until I undergo the endoscopy. If everything goes well, I might face a waiting period of 6 to 12 months before this procedure can take place. For now, their advice remains the same: endure, manage my symptoms as best as I can, and hope for the best. Due to the limited intake of liquid calories on certain days, my excessive weight has been the main factor sustaining me thus far, but I am increasingly worried about my physical limits. My BMI is still above the threshold necessary for medical interventions such as hospitalization or feeding tubes, which I find absurd given that I have lost more than a third of my body weight, mostly within the first few months. Currently, I can only manage between 700 to 1050 calories on good days when I feel capable of drinking anything. I am aware that this is not a viable long-term solution, yet I feel helpless about what my next steps should be.
Answers (1)
6/24/2025, 4:20:53 AM
OpenHealth AI
I'm truly sorry to hear about your ongoing health challenges and the significant impact they have on your daily life. It’s understandable to feel frustrated and helpless in your situation. Given your concerns and the complex nature of your symptoms, I’d like to provide some supportive guidance that might help as you await further evaluation.
Main Points
- Monitor Symptoms Closely: Keep a daily journal of your symptoms, their triggers, and your dietary intake.
- Dietary Adjustments: Implement small, frequent meals with easily digestible foods when possible.
- Engage with Your Support Network: Involve friends or family for emotional support and assistance in managing care.
Explanation
Your symptoms are quite severe and could stem from multiple causes, such as gastrointestinal issues, motility disorders, or other underlying conditions. The variability in your pain, its location, and accompanying symptoms like headaches and tremors suggest a complex issue that likely requires specialized care.
It's important to continue documenting your experiences, as this can provide valuable insights for your healthcare providers and help identify potential triggers or patterns associated with your episodes.
Next Steps
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Symptom Diary: Start a symptom diary noting:
- When the pain occurs, its severity, duration, and specific location.
- Foods consumed before episodes, even if they are minimal, to identify potential triggers.
- Other symptoms accompanying your episodes (e.g., headaches, nausea, any specific movements that worsen the pain).
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Dietary Modifications: Aim to consume smaller, more frequent meals rather than larger ones. Focus on bland, low-fiber foods that are typically easier on the stomach, such as:
- Rice, bananas, applesauce, toast (the BRAT diet).
- Stay hydrated with clear fluids if possible, as dehydration can exacerbate symptoms. Consider electrolyte solutions if you struggle to maintain hydration.
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Engagement with Healthcare Team: If you haven’t already, consider discussing:
- The urgency of the endoscopy given the severity and chronicity of your symptoms.
- Exploring other specialist opinions or options for expedited evaluation, considering your distress and weight loss.
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Emotional and Practical Support: Seek support from friends, family, or mental health professionals to discuss your feelings and concerns about the situation. Engaging in support groups for those with chronic illnesses can provide a sense of community and understanding.
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Emergency Indicators: If you experience severe worsening of your symptoms, such as persistent vomiting, inability to retain fluids, or signs of dehydration, seek immediate medical assistance.
Final Thoughts
It's important to acknowledge that while it may feel like you're in a waiting pattern right now, taking proactive steps can empower you and potentially help manage your symptoms better. You're not alone in this; seek out support as you navigate through these challenges. If there’s any specific aspect you’d like to delve into further or discuss, please let me know.
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