27/F. So in March 2020 I got Covid and have been dealing with severe full-body illness ever since - this has included pretty scary GI issues. I mention Covid because it seems to have triggered these issues, though I did have some GI problems before (pretty constant bloating, acid reflux, very occasional nausea after eating, had been to doctors and they'd dismissed it) and UC runs in my family, so I imagine I had a predisposition which Covid then exploited.
First it started with blood and mucus in stool a few times a week, then frequent abdominal pain and occasional nausea. Last June my calprotectin was slightly raised, had a colonoscopy which was clear in August. Symptoms got worse from then on until I was experiencing lots of blood daily, worsening abdominal pain daily, rushing to the loo multiple times a day but often only small amounts of loose stool, plus blood and mucus would come out (seemed like a weird mix of constipation & diarrhoea). Calprotectin in September had tripled to 690, so they put me on a 3 month course of budesonide.
This kicked in after about a month and my GI symptoms dwindled to just a small amount of blood each day, other than that normal. In January I had a small bowel MRI and to my surprise this also came back with 'no abnormalities'. Soon after that my course of budesonide finished, and now my symptoms are worse than ever. LOTS of blood every day, mucus, abdominal pain every day, bouts of nausea most days (the other day I actually threw up), the same mix of constipation & diarrhoea. I just went to the loo and was horrified when all that happened was I lost a TON of blood - the whole toilet bowl was bright red. It's never been that bad before.
I just don't know what to do because my GI doctor thinks it's 'probably just IBS' because my tests have come back normal. I keep telling him that this amount of blood is not normal! This isn't IBS! I'm doing another stool test soon and he said if it's raised again (which I assume it will be) he'll 'consider' a capsule endoscopy.
Does anyone have any advice? Similar experiences? Which tests should I be pushing for?
I'm also terrified that this could be cancer - even though the colonoscopy was fine, supposedly they miss 5% of cancers, but I think the chances of me getting another colonoscopy are very, very slim. I try to stay calm about these symptoms (and frankly my non-GI symptoms are much more debilitating so my focus is often elsewhere) but it fills me with anxiety every time I see so much blood in the toilet. I hate feeling like I'm just letting this happen and can't get the help I need for my body. Any advice would be much appreciated!