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Thread: IBD Worries So Bad

  1. #1

    IBD Worries So Bad

    I am so worried I have IBD or bowel cancer. I put another post on a while back about worries of pancreatic cancer but I've been told by a gastroenterologist that I definitely don't have it.

    I became unwell in September 2017 with what seemed to be a massive panic attack. Something I'd not had before, but had extreme nausea, had to lay across the back seat of the car I was in, felt like I was going to pass out and had a very fast heart rate. However, unlike I panic attack it continued for months. I couldn't go to work and my life changed from that point.

    A few months later in November 2017 I started to get dull aches under my ribs. Where I wasn't eating as much I had gone from going to the toilet once a day down to a few times a week. However, I had a faecal calprotectin test done and whilst it wasn't supposed to be over 50, mine came back at 350.

    I was referred for an urgent colonoscopy which aside from some evidence of diverticular disease and an internal hemorrhoid, was normal. They saw there was an abnormality in my terminal ileum but did biopsies of that and multiple points around my colon and everything came back as normal.

    Calprotectin tests several months later were down to around 19 or so.

    However, another one came back at 134. This was after dull aches and pains along the underneath of my ribs but my GP wouldn't do a calprotectin for two weeks so for all I know it could have been even higher than that.

    At the beginning of 2019 I had another colonoscopy which was also normal. I also had a capsule endoscopy which was normal apart from a slight erosion at the start of my duodenum. They did a gastroscopy as well to check but it had gone by the time they had done it. However, these tests were all done a while after the elevated calprotectin.

    I'm so worried that I've been scoped when I may have been in remission. However apparently there was no evidence of scaring.

    I go to the toilet (poo) every other day. A lot of the time it's a bit loose, but I also have times where it may be the runs and then the next time I go it's back to a normal very well formed stool. I've been told that this wouldn't happen with IBD but then I've read others have different stories.

    The last few weeks I've had pains in my lower left, lower right, upper right, in the middle under my ribs. I also have woke a few times in the morning and needed to go which doesn't seem to fit with normal IBS, which is what I've been told.

    I'm so worried in case something has been missed. A private gastroenterologist told me after the first colonoscopy that I definitely don't have IBD. Another gastroenterologist that I've been seeing privately has said the same thing.

    I weighed 15st 10lbs before all this started in September 2017 and now weigh just over 10 stone. However, the dozens of GPS I've seen and psychologists and gastroenterologists put this down to worry and only eating 1,500-1,800 calories a day normally.

    The last week or two where my stomach has been worse I've only been eating 400-800 calories a day. I just don't feel hungry and it makes me feel sick and have worse stomach pains.

    My recent blood tests were all normal, including my inflammation markers but I've read lots of people online say there was a delay in their diagnosis because their inflammatory markers were normal.

    My GP and the gastroenterologist don't want to do another calprotectin test as they said its so variable and a rise could be due to anything.

    If I end up going to the toilet two days in a row instead of skipping one day like normal, I end up in a downward spiral.

    I get mouth ulcers which I know are a symptom, but I also get told they get caused by stress and where my health anxiety is so bad are likely being caused by that.

    If I have a loose stool, I panic. The other day I had a perfectly normal stool at about 4pm and then had the runs about an hour and a half later following bad stomach pains. I've not had this before.

    I often have mucus and blood. But I'm told as the blood normally seems to be on the last part, that it is likely from a small tear or the internal hemorrhoid. I'm also told that mucus is very common in people with normal IBS like I've been told I have.

    I just don't know who to trust and so worried it's not going to be discovered until more damage has been done.

  2. #2
    Join Date
    Dec 2016
    Posts
    170

    Re: IBD Worries So Bad

    If you’ve had both a colonoscopy and capsule endoscopy, that rules out IBD. Yes Crohns can sometimes be missed on a colonoscopy but then it would be found on the capsule test. I know this because I have a fear I have IBD too so I’ve researched it! I definitely understand but you need to listen to your doctor. Your bowel habits sound normal. I usually wake up feeling like I have to go within a few minutes so I guess that is just IBS, I wouldn’t worry.

  3. #3

    Re: IBD Worries So Bad

    Thanks Librella.

    I have read so many different things about IBD being missed because the tests weren't done during the flare up.

    Ive never had the pain and discomfort this bad before. It feels like the lower left and lower right are in pain, and all along the top under my ribs.

    I'll perhaps give it another few days in case it's a bug or something but feel like it's very unlikely.

  4. #4
    Join Date
    Mar 2018
    Posts
    816

    Re: IBD Worries So Bad

    Welcome to IBS, which goes hand in hand with Anxiety and Panic, all those symptoms you described I have them off and on as well, stress makes it worse, the pain is normal as well as the different stools I never know what texture or how many times I am going to have. I have started taking fiber and a probiotic (sp?) and It's helped I figured out I can't eat onions, spicy, or large amounts of tomato and I can't drink regular milk.
    __________________

  5. #5
    Join Date
    Jul 2013
    Posts
    84

    Re: IBD Worries So Bad

    Quote Originally Posted by s32bauer View Post
    Thanks Librella.

    I have read so many different things about IBD being missed because the tests weren't done during the flare up.

    Ive never had the pain and discomfort this bad before. It feels like the lower left and lower right are in pain, and all along the top under my ribs.

    I'll perhaps give it another few days in case it's a bug or something but feel like it's very unlikely.
    Just popped in here as I have had stomach problems (I have IBS) for the last 3-4 weeks. My pain is different to usual - and is exactly the way you describe. All along my lower rib cage and then randomly elsewhere across my stomach

    Of course I am panicking - but am in for bloods next wednesday to get checked out. Not much I can do but wait now but nothing seems to make the pain go. Buscopan made me worse, Colpramin seems to ease it a little.

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