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Possible Crohn's Disease - limited knowledge!!

Posted , 5 users are following.

emilyx16
emilyx16

Hello Everyone,

My 16 year old daughter has had some troubling abdominal symptoms on and off since she was about 11 (but as a child she used to suffer awful indigestion).

Today, I took her to the GP to talk about her symptoms and follow up on blood tests done 2 weeks ago. We've found that my daughter has lost 3kg since the last appointment about 3 weeks ago and has a low B12 count. After explaining symptoms, the doctor immediately became quite concerned and my daughter's been given an urgent referral to gastroenterology. When discussing possible causes of the symptoms, Crohn's was mentioned. She seems sure that there is an upper gastrointestinal as this is where absorption takes place.

The symptoms my daughter has:

- Abdominal pain that will reduce her to tears (says she's never felt a pain like it & sometimes feels as though it's severe enough to go to A&E - she has a high pain tolerance!)

- Acid reflux/nausea occurs quite frequently.

- Diarrhea usually only accompanies the pain but can occur in between the flare of the pain.

- Mouth ulcers (these are constantly present and have been for 5 years)

- Tiredness, she says she never feels refreshed.

- Aching and extremely stiff/clicky joints - perhaps most concerning as whenever she moves a joint it clicks.

- Some bleeding although this is limited.

The 'flares' of severe pain and diarrhea however aren't long lasting - lasting about 2/3 days and occurring approx. every 2-3 months.

Although I know I can't get definitive answers from forums, is this typical of Crohn's? My knowledge of it is quite limited - quite scared about any tests she may have to have etc. so can only imagine how she feels!

Any advice appreciated smile

0 likes, 5 replies

5 Replies

  • Alfielefoo
    Alfielefoo emilyx16

    Posted

    Firstly,im sorry your daughter is not well.

    Have you seen a dentist regarding her mouth ulcers?

    They may be able to give her some mouthwash to help.

    I wouldnt like to comment on whether it sounds like crohns or not and i hope your referral comes through soon.

    This a miriad of conditions which could cause her problems and hopefully you will find out soon whats going on.

  • lilMango
    lilMango emilyx16

    Posted

    Hi 

    Sorry to hear about your daughter.The symptoms do sound that of chrons.My son was ill for almost 7 mths before his diagnosis ,he is 13yrs.he had ulcers,dramatic weight loss down to 27kg,not wanting to eat,extreme fatigue and acute tummy pain,also lesions on lower legs,chills and high temps.He did have pnemonia and glandular fever at the same time so some symptoms were due to this but mostly chrons.Get the hospital to do thorough checks,we wernt sure until endoscopy and colonoscopy,horrible but thankful to know what we are up against.Hope this helps

  • Glojo
    Glojo emilyx16

    Posted

    So sorry to hear your daughter is feeling so poorly. Hopefully when your referral comes they'll get to the bottom of it. It does sound like she has symptoms that could be crohns, but as someone else said it could be something else. It might help if she keeps a diary of what she's eaten, any pain or reaction, toilet frequency etc for when she goes to her appointment. It's all a bit overwhelming and hard to remember things when your sat in the doctors room. There are many tests they might want to do which might feel a bit daunting (or embarrassing) to her but tell her not to worry... they have seen and heard it all before. They are used to talking about bums and poo! lol. Good luck with getting a diagnosis and some relief from pain. Let us know how she gets on x
  • bb62633
    bb62633 emilyx16

    Posted

    Hi, your daughter's symptoms sound similar to my daughter's - she's 15.

    My daughter has had ME for 2 years, but ever since she's been ill she's had stomach pains, constipation, severe diarrhoea, indigestion, ulcers, chronic fatigue, anal fissure, anaemia.

    Last week her blood test showed inflammation and a faecal calprotectin test was 560 (normal is up to 200) meaning she got inflammation somewhere.

    She's been referred to a gastroenterologist but don't know how long we'll have to wait.

    I hope you get some help and answers for your daughter soon x

  • AMaria
    AMaria emilyx16

    Posted

    Sounds very like me at my worst.  I was a smoker at the time I became ill, at my worst I would have to put my cigerette down twice to run to the toilet before I could finish it.  It was a year before I was diagnosed. 

    However, to reassure you, My first appointment with the consultant I came away with an appointment for a colonoscopy (you may get an endoscopy as well if they think it's upper) and steroids.  Within 7 days on the steroids I felt better than I could ever remember feeling!

    It did take a while to find a treatment plan that worked and I have had flares but I have never been as bad as I was pre-diagnosis and I've had two pregnancies (one twins!).  

    It may not be what you planned for your daughter but she will manage xx

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