Chronic anaemia, b12 & folate deficiencies how do you get treated if unable to take them orally?

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Hi all,

I'm quite new here I posted about 8weeks ago and had lots of help and support do thank you to all that replied.

I don't know if I should have added this to my original first post but wondered if anyone can give me their help or suggestions...

Sorry if this gets long I don't seem to do anything in a straightforward way with my health anymore.

I have after many years of pain diarrhoea and fatigue got a diagnosis of terminal ileum crohn's and functional gut disorder. One of my main difficulties is that I have become unable to take oral iron or any vitamins (also can't take oral antibiotics) as if I do they cause me extreme pain and diarrhoea and feel like I'm in what I now know to be a flareup.

Years ago I could take spatone iron plus and used to take vitamins no problem.

Now it is much different and I have to have iron infusions in the day unit. The problem is that during the time it takes to establish my iron is low and for me to get an infusion the time can vary quite a lot and I feel very unwell during this time. I also am now wondering why I seem to drop suddenly within a few weeks? My consultant told me my bloods show a pattern of dropping fairly quickly is that caused by crohn's or could it be another problem?

My symptoms are made worse by the fact that my b12 has become low again after the injections being stopped now at 177 I've had a b12 injection but can only have 1 every 12 weeks which I don't think is enough and doesn't follow the nice guidelines of treating neurological symptoms with loading doses until no further improvements.

Also as I cannot take oral folic acid ive tried liquid and tablets my folate levels are now 3 which is lower than before.

Sorry for the long post and thanks so much if you have any advice or suggestions. I have an occ health appointment tomorrow and after my last meeting in work it looks like I will not be able to continue with my job although they are very supportive I've been on a career break for a long time now.

Thanks for reading this

Take care x

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  • Posted

    My b12 was low as well, but my doctor wasn't concerned at all. I was, so I take 10,000 mg per day and it keeps me at about 300. I am low in protein and despite taking large amounts of vitamin d I am still super low. I was diagnosed with ulcerative colitis, but I have been telling my doctor that it must be Crohn's disease. UC doesn't cause absorbtion issues like I have. I feel your pain. It is tough to find a doctor that can balance things. One thing get's better, then something else gets bad. You should probably be getting B12 shots. 

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    • Posted

      Hi.

      Thanks for your reply. Sorry you too are having problems with absorption and have UC I think it seems there is a general lack of priority to treat low b12 levels and from what I've read online there are many others who have low or borderline levels yet are not given b12 injections until they repeatedly request it. I've had some b12 two years ago but they were stopped as the levels got up to normal. The thing is because its giving me brain fog and making me forgetful I can't remember when it was or how quickly I responded to it.

      Just don't know where I go from here thinking of asking to be referred to a haematologist incase its not caused by the ibd. I forgot to mention it has been questioned by previous biopsies if I also may have microscopic colitis but hasn't shown on last colonoscopy.

      I hope you feel better soon I also have low vit D it also contributes to the fatigue and joint pain. Mine is 12 and.. again...I can't take the medication. I bought a spray for under the tongue but didn't feel well after that, I feel like my body is falling apart. I know exactly what you mean when one thing gets better another gets worse. I've been like this for 2 and a half yrs now and it feels endless I used to be so active. Sorry I don't want to sound like a moaner I know I have to adjust to living a bit differently I just want to be able to function and take care of my mum who I'm supposed to be caring for.

      Thank you again for your reply

      X

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    • Posted

      Yea, but I have been well for what seemed like quite a while, but despite biopsies finding no trace of disease I still have chronic bowel pain. Now my small intestine is being attacked and that is Crohn's not UC, but my doctor is reluctant to call it that. Oh well, what can one do. Hang in there it does get better. I know what you mean though, I get nausea that can last for 24 hours for no apparent reason. You just feel sick. I have had IBD since I was about 16 and now I am 48. So I can tell you it isn't always bad, we will go through spells of disease and then remission. I hope you achieve remission and get a break from it. Hang in there.

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  • Posted

    Hi Rose45257, I also have Crohn's in the terminal ileum. Can your hospital not give you Steroids injections to get your Crohn's under control? What medication do you take for your Crohn's? Methotrexate or humira injection? As for the anaemia I have my B12 injection every 8 weeks now, but a few years ago I was having the B12 injection every 4 weeks. Are you in the UK?

    Thanks Twiglet,

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  • Posted

    Hi Rose, sorry your having bad time. Can you eat egg noodles they have folic acid them. I eat them. I am on Iniflimab injection treatment at hospital for my  crohn's mild flare up.

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