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.
IBSIndigestionGastroenterology