OpenHealth Q&A

Long-Term Digestive Troubles: Seeking Answers After 15-17 Years

Greetings everyone, I am a 38-year-old Caucasian male residing in New York, although I have spent the last three years in North Carolina. My health history has been quite complex, leaving gastrointestinal specialists in New York, North Carolina, and Cleveland perplexed. Approximately 15 to 17 years ago—it's difficult to pinpoint exactly when as the symptoms began subtly—I began to suffer from persistent digestive issues. Initially, I would feel a mild discomfort after consuming large meals, accompanied by significant gas but no abdominal pain or diarrhea. Over time, my bowel movement frequency gradually escalated from once daily to three times, occasionally even four to five times, particularly when I was consuming around 4,000 calories daily. The stools remained formed but were often messy. I feel somewhat embarrassed to share that I would neglect my hygiene due to laziness and discomfort. Many nights, while working late at my computer, I would experience leakage, which, though unpleasant, is crucial to understanding my situation. At times, using a bidet would lead to brown chunks detaching from buildup akin to dried mud. Additionally, I would groom the area for my girlfriend, which sometimes resulted in bleeding—even during the aforementioned less-than-ideal hygiene. Fast forward several years, and I ended up with a perianal abscess that required lancing, and the resulting fistula was surgically removed twelve years ago. After that, I became more hygienic, and there have been no further complications in that regard, thank goodness. However, my problems with loose stools have progressively deteriorated. I now find that I can no longer handle fibrous or fatty foods, have completely eliminated ultra-processed foods, and no longer tolerate coffee. You might assume this points to Crohn’s disease, but over the past ten years, I have undergone two capsule endoscopies, two colonoscopies that included biopsies of the terminal ileum and colon, five fecal calprotectin tests, one upper endoscopy, an MRE, and many other tests—all carried out by various doctors at different intervals—yielding normal results with only mild, nonspecific findings noted during the upper endoscopy. The medical teams assert this nearly rules out Crohn’s (although I'm skeptical about declaring anything with absolute certainty without knowing the underlying cause; perhaps closer to 99% certainty). They suspect that my abscess was linked to blockages in the anal crypts, which would correlate with my previous poor habits. I have also undergone a couple of basic fecal pathogen screenings. The nonspecific findings from the upper endoscopy included mild and partial villous blunting in the duodenum along with low-grade, inactive gastritis, as well as diagnosed GERD, which I was already aware of. It's confirmed that I am not gluten intolerant, as a gluten-free diet has shown no improvement (ironically, sourdough bread appears to alleviate my symptoms), and serological tests were negative. Ultimately, my doctors have concluded that I have "IBS," a catch-all term that doesn’t offer much clarity. Currently, I've managed my situation with a restricted diet and high-dose loperamide, enabling me to maintain a semblance of normalcy in my daily life and work. However, avoiding an array of foods—fruits, vegetables, salads, beans, spicy and fried foods—has become increasingly frustrating. Throughout my travels, I have encountered numerous experiences, but one that stands out occurred in 2008 when I found myself lost in the Costa Rican rainforest and had to drink water directly from a waterfall. Though I was tested for giardia and other prevalent pathogens, could tropical sprue be a consideration? Given my partial non-celiac villous blunting, I wonder if anyone has insights or recommendations about this condition. I have consulted with SEVEN gastrointestinal specialists who seem to have exhausted their options. Any information would be greatly appreciated.

Answers (1)

6/14/2025, 3:40:51 PM

OpenHealth AI

Thank you for sharing your comprehensive health history. It sounds incredibly challenging to manage your long-term digestive issues, especially after consulting multiple specialists without definitive answers. Your symptoms and experiences are important to acknowledge, and it's understandable to seek clarity and relief.

Key Points:

1. Ongoing Digestive Issues: Your symptoms suggest an underlying gastrointestinal problem, potentially related to IBS or other conditions given the history of food intolerance and testing results.
2. Previous Findings: The mention of mild villous blunting and GERD indicates some degree of enteropathy, which can sometimes be related to other conditions like tropical sprue, but ruling out immediate threats and other serious conditions is the priority.
3. Current Management: You are using a restricted diet and loperamide to manage your symptoms, which may provide temporary relief but can also limit nutritional intake and quality of life.

Explanation:

• IBS (Irritable Bowel Syndrome) is a complex disorder that affects how the intestines work and can lead to symptoms like those you describe. While it’s often a diagnosis of exclusion, it can manifest differently in each person.
• Partial villous blunting and inactive gastritis could suggest other conditions, including potential malabsorption issues, which might stem from dietary factors or infections that are more chronic in nature.
• Considering your history of receiving medical care in various locations, travel-related infections like tropical sprue could theoretically contribute to your symptoms, but definitive testing and diagnosis are essential.

Next Steps:

1. Dietary and Nutritional Focus:

   • Consult with a Registered Dietitian: A specialist in nutrition can help you design a balanced meal plan that includes foods you can tolerate while ensuring nutritional adequacy.
   • Keep a Food Diary: Documenting what you eat and any symptoms that follow can help identify patterns and triggers that may not be immediately apparent.

2. Explore Additional Testing:

   • Given your history and current symptoms, consider discussing with your healthcare provider the possibility of tests focused on malabsorption or small intestinal bacterial overgrowth (SIBO), which could pinpoint more specific issues.
   • Ask about the potential for a comprehensive stool analysis to assess digestion and absorption more thoroughly.

3. Medications Adjustment:

   • You may need to discuss the balance between loperamide and any alternative medications that could address the underlying issues (such as gut motility) without leading to dependency.

4. Holistic Approaches:

   • Explore options like probiotics or prebiotic-rich foods to support gut health, after consulting with a healthcare provider.
   • Stress management techniques (mindfulness, therapy, etc.) can be beneficial in managing IBS symptoms, as stress often exacerbates digestive issues.

5. Follow-Up with Specialists:

   • If possible, consider seeking a second opinion from a gastrointestinal specialist who focuses on motility disorders or functional gastrointestinal disorders. They may approach your case with a fresh perspective.

While it’s understandable to feel frustrated with your journey, continuing to seek answers and support is essential. You are proactive about your health, and finding the right combination of strategies may bring relief. Don't hesitate to reach out if you have any further questions or need more information.