some advice needed

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About this time last year I experienced pains in myside. I kept putting it down to something I ate or pulled muscle (have two small children) july last year I visited hospital to see what it might be 48 hours later I was on the operating table cut from tummy down having ma appendix and a large mass removed. After a while in hospital they said that I could have crohns and that I must have been suffering for sometime. I honestly wasn't. I have been back to the hospital a few times this year having colonoscopy and more blood tests than I care to mention but they are still saying it is suggestive of crohns now I have to have an Mri scan. My question really is this normal procedure for someone to get diagnose with crohns? I have been given very little information I have research the internet and have read about symptoms and flare ups. Most information suggest that surgery is the last option. My concern is how often do flare ups happen is there any warning is there anything I can do to stop it and does a diagnosis always take along time. I am fearful that this is taking over my life. Thank you in advance.

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  • Posted

    Hi Sarah,

    I have Crohn's disease I've had it about 15 years and like you it came on sudden,I had an op in 2001 where part of my intestine was removed,I've been on azathiropine since and have kept well until last year when I've been having flare ups, I had a MRI scan last week and have got to have a camera down my throat next week to see why I'm having flare ups,I have more good days than bad ones.

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    • Posted

      Thank you for coming back to me.  I havent been given any drugs yet the doctors want to be certain so are sending me for more tests.  It seems a slow process.  Thankfully I am well in to comparrison to this time last year however it feels like a black cloud is hanging over me all the time.  Doctors appear very vague I just want to know what I can do to keep healthy and not returning to hospital.

       

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    • Posted

      Have you been told what you can and can't eat?

      i've got to be on a low fibre diet.

      what do you take when you're in pain?

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  • Posted

    hi sarah.

    ive been diagnosed for just under a year.

    I made 2 trips to the clinic, a few trips to my family physician who had to pull strings to get a referral to another specialist, who by the grace of god gave me a colonoscopy shortly after. it still took quite some time to get diagnosed, and I felt like I had to do more running around then neccessary. in hindsight, it would have taken wayyyyy longer if those close to me didnt urge my family doctor (whose a friend of theirs) to get me to a specialist asap.

    Ive been off prednisone for 8 months now, and the most common thing you'll hear is that everyone is different and what may work for you may not work for others. I have spent a lot of time looking into alternatives. I could offer some counter culture methods if youd like? I've found them to be very helpful more me.

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    • Posted

      Thank you for coming back to me.  I would appreciate some alternitives if you know some good ones my Doctor doesn't want to put me on anything until they have done all their tests wish feels like it is taking an age.  Thank you for responding lol

       

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    • Posted

      Hi,

      I totally agree with you that's all I ever hear that everyone is different  "it's not really what we want to hear all the time.

      How do you cope with the pain?

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    • Posted

      Hi no really not been given any information they just told me its trial and error I have for years followed a weight watchers diet and obviously now I am not trying to lose weight but following their eating plan does help. My issue is eating out I am happy to give up the naughty stuff at home but at weekends is where I struggle and seem to suffer the most. I tend to try and drink mint tea and all I take is paracetamol as I believe that is all I can take after having bowel surgery. I can't seem to find a pattern with food fine one minute them another time I have stomach cramps and feel like pants. I am not sure whether to see my gp or just wait for the hospital have an MRI now in June and I am back to the hospital in October it just seems like along time.
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    • Posted

      That does seem a long time to wait you would think you would get your results back before October. I see my consultant on 3rd July for all my results just got the camera next week,what hospital do you attend. 
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    • Posted

      I am at Basildon. I am not sure if they will send me the results via post before October. It just seems like a waiting game.
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    • Posted

      Where is that?

      you would think your consultant would like to talk to you about your results, I've always had a follow up appointment with my consultant for results.

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    • Posted

      Sorry blonde moment Essex is where my hospital is (south east England) I will speak to them when I go for my scan see how long the results take and then hassle my gp I guess. Thanks for talking with me it not a topic anyone in my family is familiar with

      Most people I speak to have suffered years I seem very new to this.

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    • Posted

      That's a good idea,I had never heard of Crohn's till I was told that I had it, it took a bit of getting used to but now it's just the way of life.
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    • Posted

      Thank you for your help and advice one last question I think lol do you take any multi vitamins I am conscious that maybe I am not getting everything I need to top things off im a veggie x
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    • Posted

      Your welcome, I do take centrum a multi vitamin,I also get a vitamin b12 injection every 8weeks that's because when I had my op in 2001 they had to remove that part of my intestine,I hope you get your results soon it'll put your mind at ease.
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