Hi all,
So, this is a bit of a long post, but please bear with me as I could really use some opinions.
At the beginning of September last year I came over feeling very faint, my heart was racing, I felt like I was going to be sick. When my other half googled the symptoms they sounded like a panic attack. I've always been an anxious person but never had panic attacks before, so assumed it was something worse. I was told the symptoms normally only last up to an hour. Although they eased very slightly they didn't go. In fact, for the next few weeks I was almost too weak to do anything. I couldn't work, couldn't walk more than a few minutes. It was awful.
Ive been tested for so much. Vitamin B12, had numerous urine and blood tests which the doctor said was normal.
Then around November last year, I started to feel a bit better. I was even excited about going back to work.... Yes, I had been off for months. Then I got a dull ache under my left ribs. I also had rectal bleeding, and stomach pains. I had a faecal Calprotectin test which was around 350. I was told the normal was under 50. I had an urgent referral for a colonoscopy which I had a few days before Christmas last year. They said it was normal apart from some pseudopolyps in my terminal ileum, some internal piles and a diverticular.
A few months later over the course of around five weeks I had two more Calprotectin tests which were 16 and 11. I was feeling quite hopeful. The pains continued and I kept seeing people and then had both a capsule endoscopy and a gastroscopy done. They only noted a small erosion in my duodenum. They put this down to stress.
I will now get stomach pains for most of the day. Sometimes it hurts, others it just feels swollen, almost like something is getting stuck under my ribs. Doctors have felt it and said it feels fine.
I had another Calprotectin test about a month or so ago and it came back at over 100 (I don't remember the exact number). I contacted a gastroenterologist who said he is positive I don't have crohns and that a result of 150 or so is negative for crohns.
The thing is I've read about people who have only had about 150 but still had crohns and I can't shake the feeling its that or some other IBD. They say its IBS but of course that doesn't increase Calprotectin.
I have diarrhea sometimes but most of the time it's fairly firm, in fact I go to the toilet less often than I used to before all of this started. The bleeding they have put down to the internal piles.
I still feel lightheaded most days and worry that's because of slow bleeding or lack of nutrient absorption due to inflammation. My mind is all over the place.
My GP did write to gastroenterology but they say there is nothing else to investigate as I've had a ct scan, gastroscopy, capsule endoscopy and colonoscopy.
I just hear stories about crohns going undiagnosed for years because you have to look at the right time... And or course it could be missed in general.
I'm so worried.
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