Forgive the overlong introductory post, but I figure why not just get down to brass tacks.
I’ve been having issues with my stomach/esophagus for nearly half a decade now, and I’ve resolved that this year it’s either my illnesses go or I do. The symptoms have mostly been a nagging feeling at the basin or my esophagus/the upper parts of my abdomen. It’s difficult to describe because it’s such an ambiguous-yet-pronounced pain. Sometimes it’s a feeling like I need to squirm to release a belch that doesn’t exist. Sometimes it’s a straight pain; not quite burning like reflux, bore more than burn you get from a pulled muscle. Sometimes it’s just a sharp, dizzying stab that feels to be either around my sternum or at the edge of a rib.
My history is complicated, too. At 20, I had terrible reflux and had surgery for a hiatal hernia (Laproscopic Nissen), which miraculously saved me from absolutely losing my mind. After 6 or 7 years, I started having stomach pains again, as described, and went back to see a host of doctors and surgeons. Eventually, my Nissen was “adjusted” and that was that. Except it wasn’t. The symptoms persisted, I went to another 5 or so doctors, some surgeons, had a battery of tests, and at one point, I had the surgeon peek back inside, but everything was in place. So, that leaves the question: why am I always in awful pain?!?
Up to speed on where I’ve been.
GERD – I’ve had a slew of tests here, but nothing too alarming. Still minor reflux, but not enough to merit the symptoms. I’ve tried about every GERD med in the books and a number of diet changes, but nothing’s helped. Barium swallows show everything’s in order, PH-monitoring studies show very little in the way of reflux as well.
IBS – A couple doctors have played with this one at length. I’ve been on a couple meds, and have undergone some long diet changes (some of which I still observe to this date) with zero change. I’ve done a couple variations of the low-FODMAP diet, I think it’s called, and that did little but cause me to drop weight (I’m 6”2 and 160lbs, so I don’t have a lot of weight to spare). I rarely have any bowl conditions (though the current diet I’ve been on has seemed to clog me up on occasion), but apparently the symptom’s namesake isn’t necessarily as indicative as it would seem?
Crohn’s – Another seeming dead end. Nothing showed up in tests, and a (mostly) gluten free diet at length did nothing for me. During this period of my dieting, in fact, I suffered some of my worst symptoms of the time.
Eosinophilic Esophagitis – This was a slight notion, though my white blood count wasn’t too high and I didn’t have any rings. I tried a couple medications that didn’t seem to help. Also, I went to an allergist and was found to be free of food allergies, which sounds about right, though my environmental allergies seem to be blanketed by each season’s worst threats. Not too surprising, but no one seemed to think that would cause the pain I’m struggling with.
Gallbladder – Nope. A couple tests a couple times. Nothing.
Hypersensitivity – None of the doctors seemed particularly convinced of this one, but nonetheless, I’ve taken a couple calcium channel blockers and antidepressants, which caused me a lot of very dark emotional problems somehow. Nothing got better with these.
Acalasia – Nothing showed up on the barium x-rays, but I did have a balloon inflation at one time after a nissen.
Motility – I aced the swallowing test, in spite of my physical sensations. No spasms or uneven clearing or anything. They said it was perfectly clear.
Barrett’s Esophagus – Again, I was told this definitely wasn’t what I was experiencing.
I’m sure there are some other avenues I’ve gone down that I’m forgetting. I’ve been on so many meds over the year that it’s a wonder I haven’t grown a second head or gone sterile. When this all began again in 2010 or so, the first couple years seemed to be a sort cycle of a couple months of pain followed by a couple months symptom free. Now it’s always something. I wake up with pain. Eating gives me pain. Not having eaten gives me pain. Nothing gives me relief. My current doctor has been phenomenal, but I can tell he’s lost hope in the past couple months, as had I a year ago. My family is exceptionally worried about me.
I’m still trying to understand it. Could it be nerve damage (I’m told my Vagus nerve is fine, a small concern of mine at one point)? Maybe something pinched in my spine, somehow for years? Some kind of IBS that manifests itself in the lower esophagus? Can EoE actually manifest so much pain without constricting the esophagus? Occam’s Razor is too rusty and dull for me, but I am clinging on in desperate search of answers. Has anyone else been such a medical mystery? I’ve gone from a fit guy, running 50 miles a week and very healthy and happy, to a medical trainwreck, sedentary and nearly drained of my constitution.