Just diagnoised with Crohn's really confused?

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Hi all last Wednesday I was diagnoised with the disease my doctor literally came in and said you have Crohns disease here is a prescription for 3 months steriods (start with the letter en) can't remeber the name and said I will see you in 3 months for an MRI? Did this happen this way to anyone before and do u hhave to have an MRI straight away like this? I'm on 3 steriods a day for a month then reduce to 2 is this right? What does it mean is this a high or low dose? Head is mashed I needed more of an explanation my GP havent recieved anything yet from the hospita so can't tell me anything..... So frustrated and P**d off about this. Any advise greatly appreciated.. 

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  • Posted

    I was diagnosed 10yrs ago with crohns, and certainly don't remember being told like that! I was ill for 2yrs previously, lost loads of weight. Got referred to a gastro consultant who did countless blood tests, ultrasound scans, barium X-rays and then a colonoscopy, which finally showed Crohns. I was put on pentasa to start with and told to go back in 3 months. But I was told all about the disease. Was given the crohns and colitis websites to research. And I was given the direct number for the IBD nurses for any questions or concerns I had. It does take a while to get your head around the fact that you now have this chronic illness that will affect your life. If I'm honest, I'm still getting my head around it, as mine has recently got worse and consultant has advised I take immunosuppressants which aren't nice. I'm not sure about the dosage of your medication but If you need more information on crohns you can contact the crohns and colitis uk website. They have a phone number you can call or email. I've found them helpful recently. Hope you get the answers and support you need.
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    • Posted

      Hey thanks gor the reply apparently if I was in the UK it would of being explained properly but because I'm in ireland we don't have the resources!! Entocort are the name of the steroids it's the not knowing I'd wrecking my head I might drop them an email thanks.
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  • Posted

    Hi, that is a terrible way to find out you have Crohns.  I was diagnosed with Ulcerative Colitis  (similar to Crohns) about 4 years ago but that was after I had several blood tests etc etc and culminating in a colonoscopy.  Never had an MRI.  I was put on Pentasa and steriods.  After a time the Steriods were replaced with Azathioprine.  I am now on 4 Pentasa and 4 Azathioprine a day and touching wood, I am doing fine.  As kelaimee says, look on the internet, you can get quite a bit of information from various sites, but what I would say is, no 2 people are the same with these diseases.!!!!!  What is bad for someone is good for someone else and the other way round.  Go back to your Consultant and ask questions !!!. Good luck.
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  • Posted

    Hi Lisa, 

    Thats terrible!!! I was diagnosed with Crohn's Disease just over 2 years ago and certainly was not told like that!! I didn't have my first MRI until may this year. I started on Pentasa twice a day but that has been increased to 3 times a day and I also now take azathioprine. I'm lucky, my Crohn's is kept in check most of the time, helps that I work at the hospital so I see my consultant arond and he's always checking I'm ok. 

    As for steroids it is normal to drop them by 1 tablet a week at a time.

    Hope this helps

    Nicole

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    • Posted

      Hi nic thanks gor the reply that's really what's bothering me is how bad is mine if I have to get an mri so soon I think I will have yo stalk my consultant and see what he says!
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  • Posted

    Hi Lisa

    Sorry to hear that you received a diagnosis in such an offhand manner..

    It's unacceptable that the doctor never even explained how to take your medication. It may be worth speaking to you local pharmacist. I have found them to be very helpful in explaining dosages and the like. I have had times where I've been so overwhelmed by the information that the doctor has given me that I have forgotten what I should be doing with the tablets prescribed!

    I was diagnosed back in 1987. Back then (almost as bad as saying 'during the war'?) I had a whole series of uncomfortable and painful tests before it was decided that Crohns was the culprit. We're talking barium enemas, endoscopes and small bowel meals. Yuck. It makes the hairs on the back of my neck stand on end just thinking about it! 

    I didn't start having MRIs until about five years ago. Much less aggravation to the body. It's noisy and a bit confined but a lot better than having barium and air pumped up your backside! Just remember to take off any metal jewellery - including piercings! 

    I have had loads of doses of steroids but they were prednisolone. Usually started at 40mg (8 tablets all taken together) reducing by one tablet per week. It normally takes over a week for me to start to feel the benefits. The down side is the increased appetite. I always get the munchies with steroids and feel hungry even when I am stuffed to the gills. You may also feel a bit of a rush of 'feel good' at the start of the course - so don't overdo things! I sometimes get the urge to do something stupid like a massive spring clean which is, sadly, totally out of character for me..

    I have had the rather dubious pleasure of trying most medication available for Crohns symptoms but can honestly say that the steroids probably came out on top for results.

    I recommend the National Crohns and Colitis Association as a good source of information.

    www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease

    Good luck!

    Any questions please don't hesitate -I'll do my best to answer!

     

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    • Posted

      Hey thanks a million for the reply yeah when u say the steroids make you do things my house was never as clean lol!!! I do find tho I am literally falling down after I do a massive clean. My gp advised to go for a walk got to 2k and nearly fell down in a heap maybe too much too soon!! This is so unlike me as I'm usually very active I have to be with 3 young kids. Hopefully I will get more answers when I see my consultant next fingers crossed..
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    • Posted

      Just one more question I'm getting a sharp pain right hand side if my chest just above my breast when I Google it it says gallbladder? Have you ever gor this?
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  • Posted

    Hi, Lisa  is was diagnosed with crohns 7 years ago when I was in hospital for tests. On Azathioprine 50mg, for my flare up nothing different yet. I know what your going through. Yes, had to wait for M.R I  long before I got second op to remove rectum stum removed. Well, I got told to up the high dies but, it  made me fell unwell reduced to 3 tablets then, down to two because the meds might be making feels sick 

     

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    • Posted

      Hey thanks for the reply I don't even know what stage I am at yet hopefully I can find out i when I see my consultant which is not for another 3 months... its the unknown is so head wrecking!
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  • Posted

    Tty phoning your consultants secretary and see if he has dictated the letter to your GP yet. If so explain that you gave had no real information and that your GP wants to discuss it with you but can't without the letter. This might speed the letter up.

    I've had some really interesting and long conversations with my consultants' secretaries. It pays dividends, as they will get you an answer as they're fed up with you phoning them each day.

    Good luck.

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  • Posted

    When I was diagnosed my doctor said he wanted me to have surgery to remove my colon asap as it was fully diseased. Talk about a shock. I told him to pound sand and fired him as my doctor. I found a new one with a better bed side manner that was willing to discuss all my options with me. This is so important, after all we are human beings and deserve to be treated better than dirt. If your doctor doesn't explain your options to you then get a new one. I am sorry that you have to go through this, I have been there and I still am there. Hang in there things do get better, you will see.
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