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Has your child been diagnosed with Crohn's or colitis?

Are you a parent or guardian of a child that has been diagnosed with Crohn's or colitis, but you yourself do not have Crohn's or colitis? If so, you probably have many questions. We want to hear from you! Share your story with us and ask questions. And let us know, what resources or information are you looking for?

  1. My son has just been diagnosed with IBD he will be having an endoscopy and colonoscopy in 2 weeks and hopefully then they will know what type he has and begin treatment.

    Neither myself, my husband or our 2 other children have anything like this. And its been a shock to see his symptoms come on and get progressively worse.

    We're in the UK, and I had to really push for a feacal calprotectin test the first 2 doctors smrefused and said they cant do for under 18's. His inflammatory markers in his blood were normal, however he was anaemic. Finally a 3rd doctor agreed to pull some strings and have a calprotectin feacal test done. The results came back at >1800! Since then everyone has gone into action, we've been to a pediatric gastroenterologist and now he has his endoscopy and colonoscopy booked. I just want to fast forward to when they begin treatment. It is horrible to see him in pain every single day.

    1. , I totally relate to what you're going through. Not because I have been through it, but because I watched my mum go through it with me. I was 19 at the time, so by no means "young", but it is so hard to watch your child struggle with something and be powerless to help.
      I deterioritated so quickly, that by the time I was diagnosed, I had surgery within the week. I have genuinely never really seen my mum be bothered or stressed out by anything. That period was different though, and it was a huge struggle for her, not knowing what to do to help, but desperately wanting to!
      I hope he get's his diagnosis really soon so that treatment can begin!
      - Sahara (team member)

    2. Thank you Sahara for your comment. I think you've summed up my worries. I have read about the various treatments and I just wish that whatever we try first works. Although from reading most people's stories that looks unlikely. But we're with him for as long as it takes. X

  2. Thank you for your message and the article. I think your comment about they grey area is exactly the feeling right now. Lots of lovely friends who have well meaning questions and I feel terrible I have no answers for them at the moment! I know in a couple of weeks we will know more, and although things may not be plain sailing from there, at least we will have begun the journey. It is encouraging to see what a supportive community there is built around IBD. It's just what is needed.

    1. ,

      We are here for you. Please keep us posted with the results of his tests. In the meantime have you tried any diet change to see if it helps calm symptoms a bit. I know for me cutting dairy, sugar and grains helped tremendously. Bone broth and chicken broth are very soothing for the gut. I would sip on them daily as a way to heal and get nutrients. Also, CBD oil helped lower my calprotectin levels. Perhaps this is something you can ask your doctor about?

      Big hugs, Elizabeth (team member)

    2. Thank you Elizabeth,

      We were advised to go strictly dairy free for a few weeks which we've done. It made no difference unfortunately. I like the sound of the broths and will have a go at those.

      Thank you so much for the tips. X

  3. ,

    Anything to help. We are here for you.

    Big hugs, Elizabeth (team member)

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