Can't get back to how I was before?

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Hi all,

I have a long a complicated history of abdominal pain and diarrhoea for many years. To try and summarise I was diagnosed with crohn's in the terminal ileum a year ago and have recurring iron deficiency anaemia which I have iron infusions in hospital as I can't take any oral iron. I also have functional gut disorder which I've had for many years.

I have been feeling generally unwell since 2014 when all my symptoms became unmanageable I was working part time and struggling badly with pain diarrhoea and fatigue.

I have also got low folate levels but am unable to take oral folic acid. I was having b12 injections but my levels have come back up to normal after 12 months of the steroid budesonide which I've been taken off in early march.

I am 49, I do have high blood pressure but am on medication for that.

I just keep waiting to feel better and I don't seem to be able to get back to how I was I have persistent fatigue should I feel better than this as apparently my crohn's is mild?

Thanks for any replys

X

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6 Replies

  • Posted

    Hi Rose

    ive had Crohn's for 25+ years, I've had three years of hell, which finally came to surgery, it does take time to get over a really hard session, I had my surgery just over a year and I still get so tired and struggle some days, BUT I'm pretty up beat person, and I look forward to the good days, and do as much as I can, when I'm tired I rest and chill out, so things will be new normal for you, just go with flow, life is always changing enjoy the good and just deal with the best you can, I wish you luck things will be better!

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  • Posted

    Hi Rose,

    It's tough, and sounds like you've been through a really hard time.

    I can v much relate to where you're at. Following a Crohns diagnosis a year or so back (and four years of IBS diagnosis previously).

    I'm still talking to Doctors as I have plenty of fatigue, headaches and nausea for large periods of time. Inflammation levels are under control and the mild Crohns is 'managed' according to the consultant.

    I was on budisonide for a couple of months and really struggled for at least a month or two afterwards, in part due to not going on to Pentasa for a while but I'm sure some of it was withdrawal from the steroids. For that time I'd feel terrible and do what I could to scrape through the day and head straight home to bed, some on weekend.

    I had fever like symptoms and really struggled. I think as I got over probable withdrawal, and the Pentasa kicked in after 2 months, I finally started to feel human again but still struggle with symptoms and having a normal life with some energy. Many others mention withdrawal problems and having been on them for a while it's highly possible you're experiencing the same on top of whatever symptoms remain.

    I also wonder what's a realistic expectation for mild Crohns. GP says "a normal life with the occasional flare up". I'd take that any day!

    Apologies if badly written - just wanted to reply whilst getting home on the train.

    Stay in contact

    Matt

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  • Posted

    Hi Rose

    Sorry you have had such a bad time of things. I think your general fatigue now is caused by the fact that you are on a downer, due to the Steroid being taken away. I was on Steroids for over 15 years which has messed up my bones, but I just knew I had to wean myself off, because it was a bit like a mirage, you felt better but it had not killed off the Crohns, just something that worked. It took me 2 years in all to get off prednisolone but I did it. I was told by my excellent Gastro Specialist that I may hasve to go back on them sometimes for quick blasts to bring things back to normal, but I never have, So first of all I think taking you off the Budesonide so quickly will have given you the cold turkey you are now experiencing in a fatique way. Also I have been on B12 for years, now I have it every two months instead of every three months and I really need this, it bucks me up no end. I think it is the combination of both that is giving you the extreme fatigue. Did you ask why they made the decision to withdraw both things? I was told that with Crohns you only run at about 70% of what a normal person has in the way of strength. I have had Crohns for over 50 years and still get the times when I can hardly move, and it is not laziness, just lack of strength and energy.

    Good luck and I hope things will begin to improve soon. One day you will wake up and suddenly realise that you feel like doing something you have not been able to do for a long time and you will know that you have defeated the after effects of taking hard drugs.Best wishes and fingers crossed for you.

    Sheila x

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  • Posted

    Sorry to hear you are so unwell , I am newly diagnosed with chrohns , it's all new

    To me I'm trying to work out what to eat but everything is upsetting my stomach , tiredness is awfull too ...but your symptoms sound awfull hope it gets better soon

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  • Posted

    Hi, sorry too hear you have crohn's. I have had Crohn's since 2006 I didn't know I had it. Since then two major operations. I have crohn's flare up mild and getting Infusion Treatment up at hospital every 8 weeks. So, I know what your's going through. Could it be your iron infusions giving you high blood pressure. I have high blood pressure and on tablets for it, it's one of the side effects of the treatment. Hope your crohn's get under control soon.

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    • Posted

      Hi everyone and thank you all for your replys and support I am very grateful.

      Sorry for the delay in getting back to you all I'm having a bad run of fatigue and joint pain the last few days seems worse... I'm sleeping in the day which I fight hard not to do but have had to give in.

      Yesterday I went to collect a prescription and asked about the blood test result for my vit d level it says to book a routine appointment so my vitamin D level must be low...has anyone got a good supplement that doesn't affect crohn's? I have to be very careful with taking any vitamins as most of them trigger flareups with me.

      Thanks again for your support and I hope you are feeling as well as is possible.

      xxx

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