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New to crohns any advice or help would be grateful

Posted , 5 users are following.

lisa6319
lisa6319

Hi all , to cut a long story short have not need able to work now for 3 months as i cook in a busy kitchen ,i have been vomiting, watery diarrhoea,( with mucus) tiredness to the point were i feel like I'm dragging my body around, cramps, mouth ulcers, and weight loss. Somtimes just feel trapped in my own home cause i need to be near the loo 

Went to see a specialist on the 29 th aug within a week i had ct scan, endoscopy,colonoscopy,blood tests, was asked to go back clinic 10th oct but got a phone call bringing my app forward to 22 sept , was told yesterday i had signs of crohns in small bowel and was badly inflamed , the colonoscopy did not pick it up but the ct scan and blood tests did 

I have just started a ensure plus liquid today for four weeks then go back to clinic . 

Just wanted to ask advice on crohns, please and if anyone had any tips on the liquid diet, and wot happens after i have finished the four week diet do you go on medication etc also will i get back to normal life never thought i would say this but even missing work missing the routine 

thank you for reading this post 

1 like, 5 replies

5 Replies

  • jon1969
    jon1969 lisa6319

    Posted

    Hi Lisa I know how you feel Iwas diagnosed with crohns 20 years ago it's still difficult to diagnos even now as it's often fobbed off as a tummy infection or a 101 different other things until that is you have the correct tests and then it's easy so to speak. The diet you are on is not uncommon although not  pleasent unless the flavours gave changed ? It's to give your tummy a rest from food and the drinks contain a zillion calories but is very bland and builds you up. I would imagine you may go on a steroid called prednisoline and you will feel so much better after a short while. The drug is taken short term only and various other different drugs are used instead. The thing is with crohns there are other symptoms that are nothing to do with your tummy tiredness is mine even when I feel well itchy skin sore joints etc etc different people have different stories hope I have helped Lisa and if there is anything I can help you with please post again Jon 
  • paul65297
    paul65297 lisa6319

    Posted

    I have had CD 10 years. Bad flair last year - hospitalised etc. Similar life to what you are describing. Now on Azathioprine and Humira.

    3 non-drug things have made a difference with me. 1. going dairy free 2. going gluten free 3. buying a juicer and drinking a mix of cabbage, carrot and celery juice 3 times a day.

     

    • hemohope
      hemohope paul65297

      Posted

      Hi there,

      Was wondering what the benefits of the juices are for Crohn's? 

      Thanks Ed

  • hemohope
    hemohope lisa6319

    Posted

    Hi Lisa, I experienced something very similar just over 2 years ago ... off work from a kitchen job, in constant state of illness and some serious dietary isues. After around 6 months of tests and medications, Crohn's was diagnosed. Within 1 year (including 8 weeks of steroids) I was on Humira, new job, hitting the gym and feeling better than ever! In all honesty, there are minor setbacks and it may take a while to find the right medication for you to manage your condition and get comfotable with it but mostly it's trial and error. Especially where food is concerned. 

    As in another comment, dairy is a big no for me and I feel gluten free might be another step t9 remove but you'll find what works for you in time.

  • IndieHannah
    IndieHannah lisa6319

    Posted

    Hi Lisa

    Bit late to post this i know but thought it might help.

    The liquid diet is a great way to give your bowel a rest but still feed you and its refreshing to hear it prescribed before steroids!!  I have used a liquid diet throughout my Crohn's history to stabilise me and control the inflammation.  This is mainly because i find steroids very difficult to tolerate and compared to the liquid diet have little affect on the Crohn's.

    I find the liquid diet sends me a bit mad after the second week.  its hard for people to grasp what its like not being able to eat anything at all and only drink hot or cold water.  I have tried the ensure diet but hated it.  I always use Modulen IBD....its a much cleaner preperation, it gives you a sense of making dinner as you have to prepare it all yourself (just like baby milk), you can use Nesquick milkshake flavours...so much nicer than Ensure but still limited. And a major bonus of this particular liquid diet is that it has a naturally occurring anti-inflammatory element.

    Hopefully you will already have a dietician asigned to you to help you and guide you with the use of the liquid diet and importantly, to help you re-introduce normal foods.  I can't stress enough how important this is....to have some extra support and to have someone help you understand what foods may be causing you a problem.  If you haven't got a dietician then ask your consultant for a referral.

    Anyway, like i said, probably a bit too late posting this.....but I'd like to know how you got on and where you're at with your treatment.

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