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  • Shared Experiences

    I have just been diagnosed with Crohn's disease and now feeling very scared...

    Hi there.  Very new to this.  I have just been diagnosed with Crohn's disease and now feeling very scared and struggling to understand the whole immunosuppressant medication as well. Does that mean I am going to be more prone to getting sick from other things as well
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    For more than 25 years, Crohn’s & Colitis Australia™ (formerly the Australian Crohn’s and Colitis Association) has been making life more liveable for more than ... View Profile

    Hi, Being on immunosuppressants does not mean you will be automatically susceptible to getting sick with more colds, an infection or some other ailment, mainly because the dosages used in the treatment of Crohn’s are a lot lower than when these medications are used for other medical conditions.  Your doctor will also keep check on your blood tests to ensure these medications are not making your white blood cells drop too low.  Most people with Crohn’s take these sorts of medications as not only are they effective in allowing patients dependent on steroid medication to reduce the dose and get off it altogether, they also work well in maintaining remission.   Your gastroenterologist can explain to you further about any of the side-effects.

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    hopelandic

    Healthshare Member

    Hi there, I judt found out this week that I have crohn's disease as well. And like you, I am very scared of what it all means.

  • Victoria Gaskill

    Healthshare Member

    Hi trust Im scared to But I had the first operation Victoria

  • Victoria Gaskill

    Healthshare Member

    Hi trust Im scared to But I had the first operation Victoria

  • Dr Louisa Hoey

    Clinical Psychologist, Psychologist

    I am a Clinical and Health Psychologist with over 10 years experience. I have expertise in working with people with disordered eating. I work with ... View Profile

    It is totally understandable that you are feeling scared - and well done for asking for help on this site in spite of those feelings. Brave!

    I was just thinking it might be worth talking to your GP about your fears and any other feelings you might have. Sometimes people (patients and their doctors) forget to think of emotional health in the face of a medical diagnosis - but it is really important.

    Many people find talking to a psychologist helpful when they have been diagnosed with an illness like chrones. They can help you to process the shock, anger, fear, depression and other feelings that can come up. They can help you to work out practical ways that you can problem solve and manage the illness. And they can give you strategies to manage your emotions like depression and anxiety - especially if they are starting to impact your life - family, friendships, work, fun time etc.

    Health psychologists are the specific type of psychologists that have expertise in this area.

  • Kathy Howson

    Healthshare Member

    Hi, I have had Crohns Disease for many years and been on immunesuppressants for about 10 years - not many more infections than normal but you learn to avoid people with colds etc. It was what helped me gain remission so worth a try but if you start feeling unwell then make sure you let your GP or GI know.
    The early days of diagnosis are difficult but keep asking questions and see if you can find other local online forums to converse with others with Crohns (this helps me) or check out the CCA website and see if there is a support groups close to your home.

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    Mel Haynes

    Nutritionist

    Chef, Scientist and Nutritionist. I specialise culinary nutrition and disease prevention with plant based diets. www.culinetica.com.au View Profile

    As a nutritionist I could suggest some dietary alternatives that have been proven to assist with reducing and preventing Crohn's flare ups.  Whist fibre is always an ongoing issue, especially with severe and/or chronic flare ups there is little disgussion on the impact of meat.

    This small but very postiive study showed a semi vegetarian diet maintained remission in 92% of patients compared to the control group who had a relapse rate of 63% after two years. (1)

    You can read the diet used in the link below to see if that helps you.

    - Turmeric has been shown to effectively and safely treat IBD / UC & CD (2)
    -  Kiwifruit per day (3)
    - Avoid Titanium Dioxide (whitening nanoparticles found in hard chewing gum coating) (4)


    Good luck, hopefully some of these suggestions can help.


    (1)http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877178/pdf/WJG-16-2484.pdf
    (2)  http://pubs.rsc.org/en/content/articlelanding/2012/fo/c2fo30097d#!divAbstract
    (3) Hammerle CW, Surawicz CM. Updates on treatment of irritable bowel syndrome. World J Gastroenterol. 2008 May 7; 14(17):2639-49.
    (4)http://www.ncbi.nlm.nih.gov/pubmed/10648120

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    Glenda Watts

    Healthshare Member

    Hi there,

    Sorry to hear you have been diagnosed. 

    I've had Ulcerative Colitis for 10 years and been on and off immunosuppresant medication (quite strong at times) during that time. Looking back I don't think there's been once where I have fallen ill with anything else. 
    I do like to keep fit by exercising & I eat well (mainly b/c any fatty foods, breads, creamy foods etc can not sit well in my stomach)
    When I'm at shopping centres I don't touch handrails etc. Keep plenty of hand sanitizer in the car or handbag just incase. 

    Whilst it is a shock initially, diagnosis overtime becomes easier. I had just had my first baby when diagnosed & was told to go off all medications, not breastfeed; I was devastated. I did so much research, had very suppportive network of doctors, family & friends & went on to have 3 more healthy children whilst on and off medication. 

    Join the Chrons & Colitis Foundation if you haven't already and fire as many questions as you can on forums. It all helps.

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    Lisa Chen

    Dietitian

    I am a member of DAA holding an accredited practicing dietitian (APD) and AN status.I am capable to provide individual consultation and group education to ... View Profile

    I also need to point out that this is an very individual disease: the triggering foods varies so the management solution varies too. Therefore, it is strongly recommended you to keep a food diary for “trouble foods” and avoid or limit them to very small quantiity when you have flare-ups and feel unwell. For instance, some people can tolerate high fiber foods during flare-ups but they just need to avoid consuming a big quantitiy per sitting. In contrast, some peple need to cut down fiber intake during flare-ups to give the bowel a rest.

    Howevr, no matter you feel well or not, healthy eating following the “Australian Guide to Healthy Eating” is always recommended to provide you wth adequate energy and optimum nutrition. In addtion, you also need to drink plenty of fluids. Fiber and water work together and help keep bowel movements regular. At this time, there is still no strong evidence to support taking omega-3 fatty acids or probiotics to help treat IBD or prevent flare-ups.

    You may benefit from seeing an accredited practicing dietitian for more details.

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