anyone else in the chronic illness comunity get really upset when tests come back normal? like I really don’t want to have a horrible disorder, but I also want an answer, and I don’t want it to be something people don’t think is a real disorder that people really suffer from.
(if you get grossed out stop reading here, brutally honest after the cut)
so basicly i’ve had occasional issues with diarrhea and abdominal pain for about 10 years, but they were only a day or two every few months. but two years ago, they started getting worse, longer, and more frequent. I would only have issues at night, which left me exhausted as I’m just now entering my senior year of high school. I got some digestive enzymes from my chiropractor which helped a lot, but sadly stopped helping about 6-8 month later. I was quite sad (not depressed, i just didn’t want this to be my life) that I was taking close to 40 pills a day, something normal teens can’t even comprehend.
last july I started getting even worse, I was having issues nearly every week, always at night, with worsening abdominal pain relieved by deficating.due to two of my family members having a gluten sensitivity, I decided to go gluten free for 6 months. my issue continued, gradually getting worse until november, where instead of a slow decline, the floor just fell. I was having episodes 2-4 nights a week, often starting around 7 or 8 pm and lasting till 3-4 in the morning. I had abdominal pain that qas quite bad, fluctuating between a 4 and a 7 on the pain scale. this obvioulsy could not continue, so I asked my mom to schedule an appointment with the naturopath that saw her and my sister, but she didn’t have an appoinment till late february.
my symptoms got a little bit better, but were still not something that could go undealt with. I then decided to try dairy free for a month, which was horrible ( I ate chicken and rice with veggies more times than I care to count) and didn’t help at all. But at last, both the month of no dairy and the six months of no gluten were over, though I had to delay gluten by an aditional two weeks to see if I got worse with the re-introduction of either food. I also did two weeks of no soda/carbonated drinks.
I had my first appointment witht the doctor, had some blood work which came back normal for everything but elevated liver enzymes, high platelet count, and a few allergies. she put me on a general probiotic.
a month later I was supposed to have another appointment, but as there wasn’t anything serious in my blood work that had just gotten back she decided to cancel my appointment, have me do a stool test (including one or two markers of inflamation) and see me when the results came back. test came back normal except for being low in one good bacteria, put on specialized probiotic, repeated basic blood work due to thought of low iron or anemia (always cold and occasionally have blue lips and fingernails despite normal 02 readings).
liver enzymes were still elevated, had a liver ultrasound on the second of june, still waiting on results.