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  1. Niks

    CT scan - some thickening of proximal duodenum?

    Really hope you find someone to help Jaedyn soon! It is so difficult when medical professionals don't understand how to help xxx
  2. Niks

    CT scan - some thickening of proximal duodenum?

    Hi Her GI symptoms are still the worst of everything, this is where she gets most of her pain, which is the main cause for her getting admitted to hospital, to get pain under control. Her main frustration is with the Doctors not understanding this, she is really hoping that with the Care Plan...
  3. Niks

    CT scan - some thickening of proximal duodenum?

    Hi Thought I'd let you all know that finally after 10 years we have a conclusive diagnosis. Jaime has Mitochondrial Disease, this is degenerative and affects all muscle tissue. Because her onset was as a teen, it is uncertain of the prognosis and how this will affect her.. Her main symptoms...
  4. Niks

    Can anyone explain Vitamin D2 and D3 blood results?

    Since being told there will be no tests and Jaime just has to live with it, she has just got her blood results back. Mostly ok. What does anyone think of these though? B12 -217, which is not out of normal ranges. Serum Folate 4.7, still within normal ranges but on low side. Ferritin 16 - low...
  5. Niks

    Finally some vague results from Pillcam

    Thought I'd start a new thread! Jaime finally got a call back today from GI. Pillcam was done at end of November. Since she has had Mucus and blood with no BM. Bloody D - once. Yesterday dark red blood with no BM. She has had weekly citramag to keep her moving! (as requested by hospital)...
  6. Niks

    White floating oily/frothy circles in urine

    Hi Does any one know what white floating oily circles that look frothy in urine might be? This has only just started over the last few days, but she has had kidney stones and blood in urine recently. Thank you.
  7. Niks

    Instantly vomiting after eating anything!

    Hi Has any of you had instant vomiting after eating literally anything? My daughter's GI thinks this is not a normal gastro problem and is trying to suggest it is psychological! I know that it is not, she has suffered for over a year now on and off with persistent vomiting (more on than...
  8. Niks

    Massive vent!!!

    I have just spent 5 hours in A & E, not with my daughter for a change, but with a young 13 year old lad I work with, who has severe autism and learning disabilities. Two weeks ago he had a pretty bad rectal bleed (I didn't see it, I normally work with our Young Adults). He was seen at a local...
  9. Niks

    Sticky Crohn's Forum Candle Room

    :ghug: there are no words Crohnsmom :ghug: Thinking of you and your families xxx
  10. Niks

    How long did it take to get a diagnosis?

    Hi Just thought I'd try and find out generally how long it took all of you to get a diagnosis, and what were the tests that confirmed this? If you haven't been diagnosed how long have you had symptoms and what tests again have you had that have come back 'negative'? Thank you !! :confused2:
  11. Niks

    Happy mother's day!

    It's Mother's Day here in the UK tomorrow, not sure about across the Globe! Wishing you all amazing Mum's/Mom's a fabulous Day tomorrow, you all deserve the best xx :Flower::Flower::Flower::Flower::Flower::Flower:
  12. Niks

    Best Gluten Free Bread Recipe?

    Does anyone have a recipe for good gluten free bread? I have tried a couple, but it always ends up a stodgy or gloopy?? Probably just my poor baking skills!
  13. Niks

    CT scan - some thickening of proximal duodenum?

    Have just received a copy of the letter from J's GI.. At last consultation he questioned her vomiting, and said there was no cause and her bloods have come back normal. (B12 was very low and she did have B12 loading dose) She is still vomiting EVERY day, and vomited blood two days ago. GI...
  14. Niks

    Possible MRE! Not raising hopes this time

    Hi all Just back from GI appointment with Jaime. To be honest not all that impressed, but we do seem to be getting somewhere. He asked me if I had 'seen' her being sick! YES! Over and over! He asked her if she had any 'stress' - what APART from being so sick?? GRRRRRR Once passed all...
  15. Niks

    Why is she not improving on Prednisolone?

    Hi All Jaime is back to vomiting persistently throughout the day and night. She is peeing (which is good!) but only tolerating plain water, not even colourless flavoured water anymore. She is starving because of the Pred, but immediately sick after eating anything. Bad abdo pain, same place...
  16. Niks

    The more times on Prednisolone the longer it takes to work??

    Hi This is the 4th time my daughter has been put on 30mg Pred. Although she has only managed to taper off completely once (2 days with none). Previously when put on 30mg, whether from scratch or increase, she has responded really quickly and felt much better within 3-4 days, but generally a...
  17. Niks

    Raised red rash amongst a whole load of other things!

    Jaime was discharged from hospital on Thursday after holding down just one very small meal.. Absolutely crazy :ack: She is still getting really bad abdo pain, not had a BM since having an enema in hospital on Tuesday last week. She is pretty much vomiting everything, except fluids...
  18. Niks

    Refractory Coeliacs?

    Hi all Not really sure if I am posting this in the right place, any ideas? After a horrible few weeks, Jaime is back in hospital, gradually getting worse, and not being able to hold food or fluids down at all. Pins and needles really bad (now on B12 jabs), severe abdo pain and nothing moving...
  19. Niks

    Consultant not in 'Panel Meeting' so no further forward

    After yesterday being told that we would have an answer today with what the next step would be, I am feeling totally deflated. I burst into tears when coming off the phone from one of the IBD nurses :cry: J's consultant was not even in the Panel Meeting today, so although they discussed her...
  20. Niks

    Maybe things are moving!!

    Jaime ended up in A & E all morning. She vomited so much this morning that she passed out and was out for a good couple of minutes, she vomited when she came round too!! Poor girl. Her IBD nurse told her to go to the hospital. The doctor was pretty hopeless in the fact that he said that as...
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