My Crohn's is destroying my life

Posted , 5 users are following.

I was diagnosed with Crohn's last year in October when I collapsed in pain at work. Since then I have been in and out of hospital every other month. They have done several test on me such as MRI, Colonoscopy, endoscopy, several blood test and can't remember the rest. They finally said I have Crohn's. They started me off on predisilone 80 mg a day and then made me taper it down to 0 then started me on azithiropene 50mg, but the sad thing is it's not doing any bloody justice.. I still get pain really bad cramps, along side diorrhea and vomiting I have had severe weight loss so from 8stones I have gone all the way to 6stones. I feel sick when I look at food or even eat anything wrong. I have developed really bad farting sensations that are silent but very violent and my husband gets very angry and frustrated due to the horrible stench. I just don't know what to do when I go hospital they just give me fluids and morphine for the pain it's all good for a few hours but the pain starts again.. I can't work even tho I want to.  Any little stress I take and I'm back in hospital due to the pain.. I feel hopeless can't even give time to my toddler as I'm always unwell and frustrated due to the pain. Even working is an issue, I struggle to make it to work as I'm in debt from head to toe so I'm dragging myself to work each and every day  and even that is a huge fight tbh. I'm overly tired with this and I just want to get rid.

Please give me advice of what to do 

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4 Replies

  • Posted

    I'm sorry to hear of your symptoms and hope you get an improvement soon.

    If the mediation (Aza) is not helping then you need to press your IBD nurse or consultant to try something else as there are other things which might help.

    I took Aza for 3 months and it  helped but the side effects were horrendous. Then I was on 6-Mercaptopurine which again helped but the effect on liver and pancreas were too dangerous to continue.

    I have had some respite on Humira for last 12 months.

    I wish you well 

    Pete xx

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  • Posted

    Hi. I’m sorry to hear how much you’re suffering. I totally feel you, I have a two year old & 11 year old & am a single mum. This year has been horrendous I’ve been in & out of hospital also, I was on steroids initially then azathiaprine, that caused major liver issues & didn’t touch the crohns. Whacked me back on pred again then started Humira. Still on pred (20mg) which has caused Cushing’s syndrome so was in hospital for that two wks age. It does feel like it’s never ending & some days I get so down with it but having dealt with this crap for 30 years I know it does get better but some days it gets real bad that I just wish it would go away too! I would definitely speak to your IBD nurse & get them to change your meds if aza isn’t working, there’s lots of other meds out there... Good luck & I hope you feel better soon xx 

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  • Posted

    Bless your heart Mala01 

    I get how you feel . I only want to reassure you that it will get better& there will be good & bad days. 

    Please speak to ur gastro team about how you are feeling, in terms of the effect/ non effective medication. 

    In terms of work & life balance- please speak to occupational health or Human Resources so you can manage ur sickness level and as you know stress is a no-no with the disease. There will always be stress but we will find ways to manage it. 

    Hang in there dear, there will be light at the end of the to. 

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  • Posted

    hello MALA .. YOUR expericnce is nearly a mirror image of my experience .. so listen up because i have gotten a lot of comfort from those nasty symptoms ie flatulance and pain and all the rest that goes with this very nasty condtion . my consultant asked me if to try . mesalazine i   it is a wonder drug in my opinion and im not exagerating the trade name for the type of grannular . mesalazine i take is called here in europe . SALOFALK.. and it has changed my life almost like a miracle drug . i kid you not   l am not a consultant and i am not yorr consultant but i am reallly earnestly telling you to ask your consultant to try you on measured 5 gram s of mesalazine granuals a day .. or salofalk. and i just know becasue you have exactly the symptoms described as i had . and i also had the same steroid treatment as you . try and why not .   
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