Hi, I am a young American college student, and I have struggled with extremely severe Gastrointestinal symptoms since I was about nine or ten. I have had extensive testing at many medical centers including Stanford, without any diagnosis.
I wanted to post some of the findings, see if anyone can see a bigger picture out of it.If you would like to take a look, I would appreciate it a lot. Thank you for your time.
I have daily intense mid to lower abdominal pain, diarrhea (usually 5 times daily), and I get :flare ups" where this situation gets even worse, becoming straight up 10/10 biblical type pain. I have very red, dry backs of my hands with a "sleeve" formation, the rash stopping sharply at my wrist. I have chronic fatigue, and recently developed night blindness (nyctalopia). Here are the findings.
Two endoscopies: normal
Antroduodenal manometry (measures contraction and motility of stomach and small intestine): abnormal, but not extremely. was labelled as "possible visceral hypersensitivity"
Gastric Emptying test: abnormal, delayed gastric emptying, but at only one of the intervals. Inconclusive but points to possible gastroparesis.
HITA scan with ejection fraction (scans gallbladder and its function): concretely abnormal. Strongly reduced release of bile when prompted to do so (by hormone injection). No stones or bile duct blockage. tracer got into gallbladder fine, but didnt want to get out.
Two abdominal ultrasounds (checking for vascularity, etc, etc): normal
Hydrogen breath test: abnormal, elevated gases point to bacterial infection. Did trial of metronidazole(flagyl) and symptoms did not improve.
Colonoscopy: Inconclusive. Minor friability(bleeding) and minor inflamation. Nodulation in mucosa (apparently thats normal for young people). biopsies for microscopic colitis negative.
CT scan: normal, inconclusive for whether I had celiac or not, but blood tests show I do not have that condition.
Brain MRI: normal ventricles, no legions.
Blood tests show elevation of liver ALT enzyme, double the normal value. I also have abnormally high unconjugated bilirubin, pointing to possible Gilberts syndrome.
Blood tests show negative for porfurea, crohns, celiac.
I have tried Ibs medications and they drastically worsen my symptoms: Dicyclomine (bentyl) and Nortryptyline. Both of these dramatically cut down my diarrhead but also dramatically (and I mean from 10/10 flare ups to like 20/10 please kill me I didnt think humans could suffer this much, pain) increase my pain.
I have tried Asacol and did not notice anything, I saw that I passed pills in my stool. I have been perscribed gabapentin to cope with pain but stopped using it.
I get symptoms bad regardless of what I eat but most foods make it much worse. My diet is limited to white bread, chicken, and beef (all plain of course), and I only drink water.
My father has Multiple sclerosis (actually encephalomylitis), and psoriasis, no GI symptoms. My mother has IBS and hiatal hernia and extremely severe GERD. I have an older brother who is very healthy (thank God).
Drinking too much water (or too cold/warm) exacerbates my symptoms. My flare ups are bouts of extreme 10/10 pain with severe diarrhea(usually, sometimes I will not have diarrhea at all, and if my flare up was caused by a medication, I can actually be constipated) that last around five hours. passing stool in this circumstance is extremely painful, but I am in extreme pain regardless. The pain is mid to lower abdominal. My lower back may also hurt. I also get extremely hot, sweaty, and get the shivers, and I start shaking uncontrollably. The shaking may just be from the pain?
This has lasted about 10 years and has significantly impacted my life (obviously). Any thoughts? Thank you for your time.