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    Default Chrohn's Disease

    Hi all. Hubby has just been diagnosed with Chrohn's. I was wondering if any hubbers who are living with this can let me know a bit about it. Does it affect functioning, family life etc. Feeling a bit down about it at present. He's so young (32).

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    Default Chrohn's Disease

    I have it, I was diagnosed 2 years ago at 28. I had a rocky few months coming to terms with the diagnosis, treatment etc. I was pretty upset and down about it. I had a bit of counseling to come to terms with it, don't be afraid to reach out. I've just changed medications and we're still fine tuning but it's looking good so far.

    Does your gastro have an ibd nurse? I had a few appointments with mine after the diagnosis to also get my head around it.

    Make sure your DH has a great gastro that he loves because initially he will be in his office a lot. It's an ongoing relationship and he needs to be happy with the dr.

    Try and work out triggers. I flare when stressed so I have majorly cut back on stress in my life and it's made a huge positive difference to quality of life for me.

    It's chronic but remember it's treatable, it can take a while getting meds sorted out, often things needs to be changed up to get the best results. There will be down days, flares, doctors appointments, but when it's under control, life is normal.

    It will be ok xx

    Eta: the mayo clinic (online) have some good videos explaining the disease, treatments and so on.

    crohns and colitis Australia is also a great resource, they also have a helpline
    https://www.crohnsandcolitis.com.au
    Last edited by Pearlygirl; 28-08-2015 at 15:24.

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    My SIL has it. She was DX in her early 20's and is now 55. She has had some lengthy stays in hospital at first and a few surgeries but she works full-time, is an avid equestrian and has never let it stop her from doing anything. She was unable to have children due to adhesions but she grew to accept that (not something your hubby would need to deal with). She has a colostomy bag which was part of her initial surgery that they hoped would be temporary but unfortunately there was too much damage and it became permanent but she gets along fine with it.

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    My Dad has it. He was diagnosed in 1998 after he was rushed to hospital by ambulance when his bowel perforated.
    What specifically would you like to know?

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    I guess I'm just wondering about the everyday. Will he get progressively worse? Will he have flares that come and go and how often? Can he still eat/live the same way etc.
    Thanks Pearlygirl that is comforting. We haven't gotten to know his gastro much yet as we are relying on the public system, it's a while between appointments. He is approachable though and experienced, so that's a good thing.
    The pain that sent him to the gastro in the first place hasn't really died down yet and it's been a few weeks now. Hoping he starts to feel better soon. This seems like a very nasty disease. He's worried about increased rates of bowel cancer etc and I'm sure the stress doesn't help.

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    Crohns isn't a progressive disease - as in some flares will be worse than others but how bad they are will vary. The flare that had me diagnosed was pretty bad, but currently I've been flaring since my son was born a year ago but it's been mild and I've been able to cope without too many steroids this time. But we've needed to change up the meds to get it under control better.

    I'm assuming your DH is/was on steroids for his current flare? I found it took a good few weeks to really settle down the first time even with the steroids. At the time my gastro said it would take about 3 months to feel a lot better and he was spot on with that.

    If you can afford it at all, I do recommend looking into phi for your DH. It will help a lot with faster access to colonoscopies etc.

    As for daily life, when the flares are under control day to day is ok. I have joint pain which is related and can be a PITA but the new medicine has brought that under control. Fatigue is a factor for me, some days are worse than others but you learn to cope. person to person vary so much with this disease and no 2 people walk the same path. It's very individual but your DH will find his groove. Food does not affect me at all (except beetroot!?) but some people seem to have more trouble with foods. As I said previously my only controllable trigger is stress so getting that under control has really helped. Also flares can happen with no trigger, or in my current case birth, so when they happen is most often not really under anyone's control anyway (Bugger!).

    I hope that helped a little bit! It's really overwhelming at first. But I do promise that it will be ok.

    Feel free to pm me too if you like 😊

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    Default Chrohn's Disease

    @BornToBe this link might also be helpful

    http://m.betterhealth.vic.gov.au/bhc...e_colitis?open

    There is a huge huge amount of crap/misinformation on the Internet about crohns. So I recommend only getting info from proper websites, and your gastro.
    Last edited by Pearlygirl; 04-09-2015 at 11:39.

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    My Dad is slightly abnormal in that he has to have a low fibre diet. Fibre clogs him up and will cause him a blockage.
    He does have flares, but seems to have been ok for a while, just has days where he isn't feeling well at all.


 

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