Possible crohns?

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My daughter started having abdominal pain last october, which resulted in one night her repeatedly vomiting and being in agony. She ended up having an appendectomy but after it was removed they said her appendix was actually fine. Since then the abdominal pain is still present - she has good days and then flare ups, her joints are so sore (waiting to see orthotics) she's fatigued, lost weight, feels sick and has started to vomit sometimes after eating. She had a rash on her lower legs and ankles that stayed for months. She's had blood work taken and ruled out celiac disease and just had a negative faecal calprotectin result as well. Consultant is reluctant to perform any other tests and is putting it down to Chronic abdominal pain. I just feel with all these symptoms together it's something else and was hoping for some advice - it's been 8 months since the start of her symptoms and we're getting nowhere - the amount of time she's missing from school is ridiculous.

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4 Replies

  • Posted

    Hi

    So sorry to hear that your daughter is so unwell.All of the symptoms you have said are exactly what my 13 yr old had and they thought it was  a little gastroenteritis.I had to push for a hospital appointment after going to gp twice as he had gone down to 25kg and the rash on legs and stomach pain was terrible after 4 months.He could not eat much and wanted to be sick all the time.They referred  him straight to  pediatric consultant and they gave him an immediate ultrasound which showed severe inflammation in and around the bowel.Within a few days due to his severity he was booked in to see another consultant  specialising in gastro conditions and was given and endoscopy and colonoscopy  straight away which showed severe inflammation, ulcers, diagnosis chrons disease. His bloods showed severe inflammation

    I recommend you push to be referred to see a paediatric gastro consultant asap, as this is hard to diagnose and as a mum I think you have  to follow your instincts.  I hope this helps

    • Posted

      Thank you for commenting. Sorry you've had to go through this as well. She does have a paeds consultant but he won't put her forward for other tests such as endoscopy or colonoscopy because her one stool sample was negative. I know for some people it can take a while for a diagnosis but they seem quite content to call it chronic abdominal pain for now which basically means they don't know what's wrong so that will do. Fingers crossed it isn't crohns, I know how awful that can be but just any answers would make me happy.

  • Posted

    Hello, Kelly.

    I'm sorry to hear about your daughter's health problems, which, apart from the rash, sound remarkably similar to my husband's. He also had an appendectomy in his late teens, and suffered from vomiting after eating. After he started to lose a lot of weight, he was diagnosed as coeliac, and did seem to pick up appreciably on a gluten-,free diet. However, by the time he reached his early forties, the pain returned with a vengeance, and further tests revealed that he had Crohn's disease, and he began steroid treatment. Over the next ten years of so the pain became unbearable, and he finally had surgery to remove a length of bowel, after which he was considerably improved. These days, he is still suffering from fatigue, but the cause is unclear because he also has Parkinson's disease. In your position, I think I should request a second opinion, and ask for a colonoscopy to be carried out. It was the only way that provided a true diagnosis for my husband. You might also find it helpful to approach the National Association for Crohn's and Colitis for more information . I do hope that I have been of some help, and that your daughter will soon be feeling better.

  • Posted

    You need to build a new intestinal flora. How long does it take? Approximately two years and the result is fantastic. How do I know? Fifteen operations, all medicines on the market, all illegal drugs on the market, and then the construction of the new intestinal flora and Chron is no longer present. Doctors could not believe how the fistulas closed themselves. Therefore, food food food is very important !!!

     

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