Convinced my teenage daughter has crohn's.

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Hi all,

I hope you don't mind me posting here but I am absolutely at my wits end!

My daughter is nearly 17 and has suffered tremendously with mouth ulcers, awful stomach cramps and frequent bouts of diarrhoea since she was 11 years old. I took her to a GP, who dismissed it as "one of those things" and refused to do tests. I persisted and returned 8 weeks later as she had been on the floor screaming from the pain. He did blood tests and found low levels of inflammation and very low B12 (I believe it was 95ng/l) but said it was nothing to be too concerned over, so she was prescribed with B12 supplements in 2012 after he had established she did not have pernicious anaemia.

I assumed this would resolve the symptoms, but they persisted and actually got worse. The mouth ulcers were unrelenting and the stomach cramps would come once every few weeks and reduce her to fits of tears. I hated to see her like it. 2014 showed a B12 level of 61ng/l, despite taking supplements everyday for 2 years. Again, the GP dismissed it as nothing to worry about.

Perhaps what's most concerning more recently is the bouts are getting very severe. Today she called me from school in tears from the pain. She was extremely embarrassed as she was in class when severe cramps started and is quiet anyway so wouldn't want to cause a fuss. She got a bus back home and felt an immediate urge to use the toilet, and was in excruciating pain because of it. She's shedding weight without trying, and her appetite (especially over the last 5 days) is next to nothing. I'm getting her to drink plenty of water but she is really struggling and is tired all the time, with a low grade fever of about 38.4C.

I called the GP when symptoms started a few days ago - a different one this time. He didn't want to book a consultation and just ordered repeat B12 tests, which are tomorrow.

Meanwhile, I am convinced there is something more sinister happening. I feel like we aren't being taken seriously, perhaps due to her age.

I would appreciate any advice, are these symptoms typical of IBD?

I've persisted for a referral but GP's haven't done any further tests.

She's feeling so awful and I wish I could help in treating this for her.

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9 Replies

  • Posted

    Hi e69543,

     I'm so sorry your daughter is suffering so much. Your daughter needs to see a Gastroenterologist. I have crohn's for 52 years and is the pain in her intestine lower right and above the bellybutton. Does she have diarriahea with or without blood. My diarriahea is without blood. Was she tested for  CD or UC. Did she have a full blood count from  any doctor. She needs one also. Please insist that your GP give you a referral for a GI. God be with you. I know how she feels since I was 14 years old when they found mine.

     Crohn's Dx 1963 Meds: Azathioprine 50mg, multi vitamin with minerals, vitamin D3 5000iu, Coq 10, 100mg per day, resvisatroil 100mg per day, DHA 600mg per day. Old Med: Pentasa didn't work

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    • Posted

      Thanks for your reply.

      Had blood tests this morning - her blood was hard to get today (plebebotomist suggests it was dehydration from diarrhoea). No blood - pain is lower but always bloating and crampy in the lower right (once I assumed she had appendicitis as she was in so much pain!)

      No IBD tests done as doctor would always say it's IBS ("something everyone suffers with from time to time"!!). Tests were done for coeliac which came back negative.

      I honestly don't know what to do! Part of me is tempted to take her to a&e, where they'd hopefully listen, so it can all be sorted.

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  • Posted

    When I first got Ill with my crohns I had all the same symptoms apart from the mouth ulcers but crohns affects from mouth to bum so sounds likely to be crohns.

    I went to the gp over 9 times and they sent me away saying it was stomach acid or an allergy etc

    I only got seen as I went to a and e which they weren't happy me being there!! my inflammation and infection was of the scale

    You have to push and tell them you think she has crohns as they seem very reluctant to diagnose!!!!

    I really hope your daughter geys better soon, is the worst feeling but now I'm on mens I'm so much better xx

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    • Posted

      Thanks for your reply,

      they do seem so reluctant to test, it's so frustrating for both of us! I honestly feel like they are shrugging it off and saying it's all in her head.

      Whatever it is, it's so nasty. I am tempted to take her to a&e myself, hopefully they would finally resolve it. How long did you show symptoms before being diagnosed?

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    • Posted

      I first felt ill in the April when I got back from holiday. I had really bad acid reflux which I hadn't had before. The doctors gave me Omeprazole tablets for that and I was fine for a while. I had a dodgy tummy since the holiday but put it down to being in a foreign country. 

      It wasn't until the June when I was sitting to do my A-Level exams when I had such bad tummy pain which I thought was food posioning from a sausage roll I had that morning! Slowly I just got worse and worse and was in bed for a couple of months and lost over a stone in weight within 2 weeks! 

      It wasn't until September 22nd that I was officially diagnosed. However a few weeks before that they put me on Mesasalzine tablets which worked a miracle for me! They are the lowest type of medication you can take for Crohn's so I am very lucky to still be on them and they keep me in remission. 

      If you feel you need to take her to A & E because no one else will listen then do it! I had to go as was in so much pain i couldn't even get up and down the stairs!!

       

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  • Posted

    I don't understand why the doctor is waiting at all with her. she needs to be evaluated soon or she will end up in the hospital. That is what happened to me and Crohn's disease or UC can occur at any age. I had symptoms of IBD ever since I was really young, but it took 38 years befor it was so bad that I had to be hospitalized for it. By this time I was so weak from blood loss that I could hardly walk. I also have CDIFF and IBS, these things along with CD makes for a painful life but it is still worth it. I hope that she can get into a gastroenterologist soon as I would have to believe that she has some form of IBD. She could be rid of her pain in a few days by just taking Prednisone, however this drug is hard on our bodies and unfortunately there are not that many good choices for medication they all have there side effects. I wish you both well and keep pushing for her she needs your help. This disease can rob one of their energy so quickly.
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  • Posted

    Hi, sorry to hear your daughter is suffering. It sounds like cronhs disease, I had the same symtoms. I suggest see another doctor,  and gets tests done. Let me know how she gets on.
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  • Posted

    Hi

    I agree with others that you need to see a gastroenterologist however in the meantime you might find it helps for your daughter to be careful to avoid some foods. Things like spicy food, high fibre cereals, raw veg can agrevate things. Think of what was eaten before a flare up. Best of luck.

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  • Posted

    Took her to a different GP and got blood results today - she's at 58 so still going down despite the tablets. Finally going to start the B12 injections!

    He said the symptoms are highly suggestive of crohn's and is running some antibody tests next week and will send her to gastroenterology department (he's also referring her to haematology and gynaecology) as a few things showed up in the tests he ran (inflammation in blood, high wbc count, low blood pressure, fever and some swollen lymph nodes). I'm really worried but trust that progress is being made now, thank you for all your replies.

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