Hey! I am new here and wanted to share my journey so far in trying to get a diagnosis and was wondering if anyone had gone through something similar?
It all started one day when I was at school. I started getting really nauseous, felt a strong urge to us the bathroom, and had severe abdominal pain. I excussed myself from class and practically ran to the bathroom just in time to basically explode for the next few minutes. I had to keep myself from vomiting (no clue to this day how I didn't) and instead of seeing the nurse I just continued my day thinking it was nothing because I already have GERD and maybe this was just a flare with some crazy diarrhea (definitely not a symptom of GERD but ya know...gotta find an excuse to excuse it). Well as the day went by I started developing other symptoms of a sickness. I got home and had a fever, explosive diarrhea, and a horrible headache. We chalked it up to a sickness but it went on for a week. Finally I dropped the fever and headache but the diarrhea and stomach pain never went away. In fact it went on for about a month before we even did anything about it. My mom knew but we just kept saying it was probably IBS since it goes right along with GERD. Finally after 4 weeks of running to the bathroom 10+ times per day, abdominal pain, bloating, gas, and fatigue was really setting in, we decided to talk to my doctor. She said it was probably just a flu and my body forgot to stop with the diarrhea. She told me to take some Imodium and if it didn't stop to come back and see her. Well the diarrhea stopped for maybe a week when it was back to running to the bathroom several times per day. It really made school hard because I would have to get up super early to plan for the long bathroom visits in the morning to hopefully get it out of my system before school. Then I would not eat anything in hopes of not missing tons of class. When I got home I would be so exhausted that I would nap before even being able to do my homework. This happened day in and day out and really started dropping my grades and making life misserable. Side note- I don't do dairy, eggs, or tomatoes because that causes my GERD to flare.
Finally we decided there had to be something more serious going on after weeks of all these symptoms. We went back to the doctor and she ordered a stool sample to test for parasites and ova. Thats when things kicked up a notch. There started being nights of 10+ bathroom visits and just not being able to get off the toilet because it just kept coming. I would throw up, have severe abdominal pain, and it was exhausting. The stool sample came back negative so she put me on a gluten free diet for 3 weeks. The diet didn't help at all so that is when we decided to go to my GI (I already had one from when I got diagnosied with GERD).
I wasn't going to be able to get an appointment for over a month but then the nurse heard my symptoms and decided she wanted for me to be seen ASAP. I got an appointment for 5 days later. I went and the doctor never said what he thought it was just ordered bloodwork and a celiac antibody test. He also put me on Bentyl which is an antispasmodic used for IBS. My bloodwork was all normal as was the celiac test. He said I probably had IBS. However, the bentyl wasn't working so we pushed for more answers. He then ordered a stool sample to test for malabsorption and calprotectin. It turns out I have malabsorption and borderline calprotectin levels. This is when things got even more out of hand for a few days. I had severe vomiting, dehydration, diarrhea, and abdominal pain and almost landed in the ER. I thought I was going to die. My GI put me on a low fructose diet to see if that helped since I have malabsorption for sure and that didn't do a thing.
The endoscopy and colonoscopy:
After no other options working my GI decided we needed to do an endoscopy and colonoscopy ASAP. He scheduled me for 3 days later. I did the dreaded prep and went in for the scopes this past Thursday. He said everything was visually normal but he took about 36 biopsies (that is a lot in my opinion, but I am very thankful he took plenty while he was in there). We are still waiting for the results and they should be back early this week.
I was just wondering if anyone has gone through something similiar. My main symptoms are diarrhea (very occasionally constipation), abdominal pain, no appetite, lost 8 pounds and am already underweight so I weigh around 87 pounds, bloating, gas, mucus in stool, and canker sores. I have already diagnosed malabsorption but also borderline calprotectin levels. Crohn's also runs in the family so could I have it even though everything "looks" normal on the scopes and my calprotectin levels were only borderline? Just wanted to hear your opinions and see if anyone had something similar happen to them.