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Sure I have IBD but can't get a diagnosis; help?

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!

  1. (Oh also should mention that a month into taking budesonide my calprotectin had gone back down to 180)

    1. ,

      I am so sorry that you are going through this. There is nothing more frustrating than knowing something is wrong, experiencing horrible symptoms and not getting the attention you feel you need from doctors.

      It definitely sounds like something more than just IBS, again I am not diagnosing you because I am no doctor, but I would push for more testing. Here is an article that shows testing for Crohn's. Go over it and maybe even print it out and discuss it with your doctor.

      Also, you should definitely push for a pill cam test. If your doctor gives you a hard time getting one, is it possible to change doctors? Not sure where you are located but it seems like your doctor isn't very responsive to your needs. If you are able to change, I would immediately. If not, then stand your ground and push for more testing until you get to the bottom of whats going on.

      Were biopsies taken during your colonoscopy?

      Also, what does your diet look like?

      Sending strength your way, Elizabeth (team member)

      1. thank you so much for your reply Elizabeth. I will definitely push for a pill cam test. My doctor said the reason they didn't want to schedule one immediately was because 'all of these tests carry risks' but I'm not sure what he meant by that - frankly I think they just don't want to schedule tests that'll cost them money (I'm in the UK). I've done some research into the pill cam but am unclear on one thing - do you know if it looks into the colon, throat and stomach as well, or just the small bowel?

        As for whether it's possible to change doctors, honestly, I'm not sure. Here in the UK I've always found the healthcare system pretty confusing (although obviously I'm glad our healthcare isn't privatized) - you often have to push hard to receive medical attention, it takes a very long time to be seen, and I don't get the impression that it's possible to just request another doctor, unless you can afford to go private (which I can't). I also have my concerns as to whether another doctor would be any good - absolutely every specialist on the NHS I've ever seen has been dismissive, condescending, and difficult to get tests out of. I've managed to find a wonderful GP, and have met many lovely nurses, but the specialists & heads of department tend to be very difficult to work with. I will look into it, though.

        Biopsies were taken during my colonoscopy - they were all normal except for the lower small bowel (I believe the terminal ileum?) which showed minor inflammation. They said they believed this was 'of no clinical significance'. Of course given my ongoing symptoms I think it definitely is of clinical significance.

        Prior to getting ill my diet was mostly plant-based, pretty healthy, but starch and fibre heavy, which I understand can be an issue with IBD. Since getting ill my diet's been free of gluten, wheat, sugar, caffeine, alcohol, citrus, tomatoes, and processed foods. Still no meat or dairy, but I have had to add back in fish and eggs for calories. Since November I've been doing a modified (insomuch as I've needed to add more carbs, mostly in the form of oats and potatoes, as I was getting really weak and dizzy without them) version of the IBD-AID diet, started off at Phase 1 but have added in a few things from Phase 2. I really don't know if it's helping at all but have become scared to add too many foods back in. At this point though it seems like my bowels can't cope with any food.

        1. Wow, sounds like you are really being proactive and taking care of yourself. Honestly, I think perhaps it would be best to really push for the pill cam test considering they found some inflammation in the small bowel. The Pill Cam shows the entire digestive system. So basically, you swallow a small camera that is inside a pill. The camera records everything it sees. So once swallowed it will show the inside of mouth, esophagus, stomach, small intestine, large intestine, rectum. It is constantly recording its journey the moment you swallow it.

          I mean, as far as there being risks, yes there have been times where if you have an obstruction the pill cam can get stuck and they have to go in and retrieve it. But I mean, that isn't the norm and with any test there are risks.

          I have had the pill cam test done twice. Never had an issue.

          I hope you get answers soon.

          Just a thought, have you tried seeing a Naturopathic Doctor or Functional Doctor? Maybe a knew set of eyes and another way of treating the body would be beneficial to you. I see one in addition to my Gastroenterologist and it was the best thing I ever did for myself.

          Hugs, Elizabeth (team member)

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