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High calprotectin level and back back -help

Posted , 4 users are following.

Marco99
Marco99

Hi All, in September I had serious stomach pain and was told it may be ibs. Blood test were all clear but stool sample shows 356 of high calprotectin, apparently meaning it can't be ibs but maybe ibd instead. I also have a dull lower back pain. My doc has told me to go for colonoscopy but the writing time is two months. I am very fit and go to the gym every day, but I am worried about this health scare and having to wait for two months. It is over £2k to go private and am considering this as I can't worry for another two months, I just want to know what is going on. Can anyone help or suggest what may be the best way forward. Thanks and good health to you all smile

0 likes, 5 replies

5 Replies

  • jenny55563
    jenny55563 Marco99

    Posted

    Hi marco,

    Don't panic, first bit of advice, secondly I had 500 calprotectin was scoped either end and it found nothing and the levels are right down now. That said, it does usually point to IBD, I would insist they do a microbial stool sample to check you haven't got a bug, also the h.pylori breath test before scoping. Also colonoscopy only shows your large bowel and the start of your small bowel a "pillcam" would show your stomach all the small bowel and large bowel. However it cannot take a biopsy. If you are worried about cancer and have a family history your GP can refer you to bowel cancer screening I the meantime, this would involve a rectal exam, and a camera looking at only the first part of your large bowel, this can be done within 2 weeks of your go referal, if you are housebound there Re drugs the doc can give you that can firm you up but you have to be very careful not to overdo them and get bunged up good luck

    • Marco99
      Marco99 jenny55563

      Posted

      Thanks Jenny for the reply. So if they found nothng and the levels reduced, what was wrong? Was it a temporary illness or is it some form of IBD? I am wondering if this is just a passing illness that I have or something more sinister. I think we all worry about the big C, but there is no history in the family, but also no history of IBD either. The lower back pain seems to point to ulcercolitis, but I am just guessing. I am totally mobile and otherwise extremely well and feel good generally, but this has been going on for a few months now and I am beginning to worry and panic as I am never normally ill. Thanks again for your time and well wishes.
    • jenny55563
      jenny55563 Marco99

      Posted

      We still don't know for sure they know it's autoimmune (I have another autoimmune disease) I too have lower back pain and tailbone pain looking forward to a cortisone shot today. What I will say is try not to go down the private route, I paid for an upper an ultrasound as the pain under my ribs had me convinced it was gallbladder, it wasn't, and the worrying messed with my head. There is inflammation somewhere, it affects my joints and eyes also so I see a rheumatologist, we deal with the symptoms and he thinks Sjögren's at the moment. What I'm trying to say is while I'm overwhelmed by symptoms and I don't have a solid diagnosis it is hard, but you have to focus on keeping your weight up, eating healthily and distracting yourself, if you get to the point where the pain is intolerable take yourself to hospital
  • IndieHannah
    IndieHannah Marco99

    Posted

    Hi Marco

    Sounds like you are worrying far too much. If you are generally fit and healthy then whatever is going on you will be able to handle it. It can take a very long time and much uncertainty before a true diagnosis is found and in the meantime you'll drive yourself nuts!!

    A colonoscopy will be able to determine cancer for sure so at least you can rule that out....... Just hang fire, be as patient as you can be and breathe.....sometimes we just have to trust that things will work out.

    Keep going to the gym and staying healthy and know that when it comes to being scared about ill health you really aren't alone.

    I really hope it all works out ok for you

    Take good care

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