Home› Health & Wellbeing
If you need urgent support, call 999 or go to your nearest A&E. To contact our Crisis Messenger (open 24/7) text THEMIX to 85258.
Options

I have a diagnosis

Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
in Health & Wellbeing
Some of you may remember when my doctor thought I had Celiac - well it turns out I have Crohns disease. I was dreading them telling me this. I have a history of it in my family and it's something I will be stuck with for life. I'm going on medication/steroids today. I'm so worried about putting on weight but I'm sick of being ill and in pain all the time.
I've been reading up on it and seached on here about it, it all looks really scary.
If anyone has any avice or anything they want to share - particularly good things! Then please do as I'm feeling really down at the moment and under lots of stress with other parts of my life too.
Thanks :)

Comments

  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    At least you know what it is now so you can treat it and adjust your diet etc. I know a few people with this and they seem to get by ok. There are varying degrees of it though. Maybe do some research about it on the net. I'm sure there are associations that give advice and where people can share experiences etc.
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Thanks chick.
    The Doctor at the hospital seemed preety confident that this medication should have me feeling better in a few weeks. So here goes!
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    I hope you manage to control it Vickie. Not a nice thing to learn, but youve been living with it already without knowing what it was, so nothings changed except now you have knowledge and can start looking after yourself. that cna only be a good thing.

    hug.gif
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    If it's any consolation, one of my mates has Crohn's disease and doesn't seem to have gained a huge amount of weight from it - he's forever banging on about how he still has the same jeans size he had when he was 15!

    As everyone's said, at least now you can start getting it more under control and should start feeling lots better for it :)
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    My sisters boyfriend has had Crohns disease most of his life. I don't know a huge deal about it, but I do sympathise with you for what you must be going through.
    He has always been an active person though, and if he didn't say he had it then I wouldn't of known.

    Apparently the steroids do give you a big appetite, but he never put any weight on through it.

    ETA: I just remembered there was a thread on this a while back. I dunno if there is anything in there that helps but here ya go:

    http://vbulletin.thesite.org/showthread.php?t=98467&highlight=Crohns
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    I don't have any words of wisdom to offer I'm afraid, but I'm sending you my love! You'll be ok lovey xx
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    I see a diagnosis as a positive thing. Like SCC says, you were ill anyway, so the only thing that's really changed now is that you know what you're up against, and you can get the right treatment to make you feel better.

    Hope you feel better soon :)
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Hey,

    I don't really have any advice... Just wanted to say I know some people with Crohns, and it's really not nice but they cope OK and are well more often than not.
    I'm glad you've got a diagnosis though... Better to know what you're dealing with.
    I kind of know what you're going through with being diagnosed with a chronic illness though so just wanted to send some *hugs* your way.

    I hope you're feeling better soon.
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    My brothers best mate has Crohns, had a few problems at first but he now leads the same life as the rest of them, horrible teenage boys.

    Make sure it's being managed well and things should be reasonably ok. Bear in mind that life can really only get better than it has been before it was diagnosed.
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    yeah, I guess you found it already, that there is a big thread about it on here. fellow (ex)-member intrepide suffers from crohns disease too and discussed a lot with other fellow sufferers, how to cope with it, or how to reduce the effects, like stress, diet, etc etc.
    JamesZero wrote: »

    http://vbulletin.thesite.org/showthread.php?t=98467&highlight=Crohns

    this here.
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Surely knowing what your condition is and getting the aappropriate treatment is much better than being ill! If your worried about weight gain try filling yourself up on lots of fruit and veg or drinking a pint of water before meals.
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    hey

    my mum has crohns and it runs in my family so i can understand your fears-the thing is it doesnt need to be your life-you know whats wrong and over time you'll learn to live with it and lead a normalish life

    hope your ok

    take care
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    why does everyone's mum, dad, boyfriend, aunt, dog, sister has Crohns disease? I never heard from a single case over here...

    Is it more wide-spread in the uk (since it runs in the bloodline) ?
    is there a study about it?
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    ohh i'm sorry to hear that. :( like your doc says you should start feeling better soon. you know how i'm not very well at the moment either, well i'm having my gastroscopy in 2 weeks - i'm really hoping there is actually something wrong with me! i know that sounds strange but at least then i know it can be treated.
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    lucifer devil wrote: »
    i know that sounds strange but at least then i know it can be treated.

    Doesn't sound strange at all! I'm desperate to be diagnosed with something. I've stopped being allowed the (admittedly fairly high-risk) treatment that makes me feel 100 times better cause I don't have a definite diagnosis. :grump:

    If you previously felt well, then being diagnosed with something can be a terrible thing, but if you've been having moderate-severe uncontrolled symptoms anyway, then the certainty of knowing what it is and how you treat it is a great thing. :thumb:
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    Thank you for your kinds words people.
    You are all right. Finally I have a diagnosis, I have been waiting for, for years.
    And yes, the only way is up now. Start medication today, god there's loads to take, I shall be rattling for weeks!
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    My sister's best friend was recently diagnosed with Chrohn's after a long period of not knowing what was wrong with her. She's getting better now, she's accepted that her lifestyle has to change permanently and I think that was the worst part of it for her - alcohol, nights out etc being cut short.

    It's a strange feeling being diagnosed with an illness. I was diagnosed with Ehlers-Danlos Syndrome last august and only now am I coming to terms with it - it's explained a lot too. It's a bit like going through the grieving process, being diagosed with something, because it can really change things and I find that to be the scariest thing.

    Also, don't worry yourself too much over it - reading about it on the net can be good for a while but don't let it scare you, there's so much bullcrap written about health and illness on the internet that it can be dangerous. Take it with a pinch of salt, is all I say.
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    kaffrin wrote: »
    Doesn't sound strange at all! I'm desperate to be diagnosed with something. I've stopped being allowed the (admittedly fairly high-risk) treatment that makes me feel 100 times better cause I don't have a definite diagnosis. :grump:

    If you previously felt well, then being diagnosed with something can be a terrible thing, but if you've been having moderate-severe uncontrolled symptoms anyway, then the certainty of knowing what it is and how you treat it is a great thing. :thumb:


    i think it will seriously tip me over the edge if there's nothing wrong with me. :(
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    lucifer devil wrote: »
    i think it will seriously tip me over the edge if there's nothing wrong with me. :(

    Yeah, if you were suffering, but then told there was nothing wrong, that'd be pretty shit. I think a lot of people who've never been ill long term think that's odd, but 'nothing wrong' = no help, no treatment, and no sympathy. Obviously it would be best for them to find out it's something very mild and easily cured. But something is better than nothing.

    I'm in the very slightly more fortunate position that all my specialists agree there is something afoot, but they are all too busy scratching their bollocks and being generally incompetent to decide what it might be. :yeees:
  • Options
    Former MemberFormer Member Posts: 1,876,323 The Mix Honorary Guru
    satehen wrote: »
    If your worried about weight gain try filling yourself up on lots of fruit and veg or drinking a pint of water before meals.
    Hellllloooooooooooo VV. I'm sorry to hear that you've been diagnosed with Crohn's. There's nothing nice about it but at least you can now start with the problem. I don't have it but my friend was diagnosed last year. She hasn't put on any weight due to the steroids and is still as slim as ever. She was worried about that, however, but consoled herself with the fact that each time the Crohn's flared up, she would lose the weight anyway. I'm not sure that's all that much of a silver lining if I'm honest but I thought that I'd share it with you anyway. I also wanted to say to be careful about what fruit you eat (see quote above) as she did say that she found that bananas were one of the worst possible things that she could have, or anything acidic.

    Hope things start to get better for you now.
Sign In or Register to comment.