Tiredness and Crohns nightmare !!!

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I've had Crohns for 20 years I have a structure but is under control with drugs but the tiredness and fatigue is terrible specialist isn't mush help or understanding on this point how do others cope with it ? My bloods are checked regularly and are always fine. I sometimes wonder how I'm going to get thought the day at work sometimes and don't have the strength to do anything when I get it at night and I cannot wait to get to bed even if it's to watch tv I wouldn't mind but I'm no party animal has anyone got any sensible suggestions please ? I've just registered with a new dr and I'm going for the first time next week to disscus this with her Jon

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  • Posted

    Ah john i really feel for you, and experience the same myself!

    Are you in the uk?

    If so, you could ask for later start or earlier finish at work?

    Have they checked your b12, iron stores and folate?

    Im sorry you feel so rubbish, i know how awful it is.

    X

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  • Posted

    I know it is tough. I am in the same boat. Sometimes it is the medications that cause more problems than they help. I am in a state of remission but I still get a lot of pain and nausea at times. It is a terrible disease. Hopefully the new doctor will have some ideas for you if not I find if you seek out the best learning institute in your state, if you live in the USA. They will have programs and doctors that specialize in IBD. I am talking about Universities that have medical institutes in them such as UCLA or UW. They have some of the best doctors around and most standard gastro's don't specialize in IBD so they are not what you want if you have a complex disease such as Crohn's. Hang in there man, you are not alone.
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    • Posted

      No I'm in the uk mate hoping going to this new Drs will have a positive outcome I could sleep for 24 hours some days but I'm sure this isn't the answer Jon
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  • Posted

    Hi Jon,

    I was going to mention iron too. Even if your haemoglobin levels are normal is your ferritin level low?

    Please can I ask if the tiredness is constant, all day every day or does it fluctuate?

    I am having real problems with fatigue but can be fine for a few hours or a morning and then it seems to hit and floors me making me feel very weak. Some days are the opposite and I feel weak and fatigued from the moment I wake up but then can feel better by the afternoon. My calprotectin level is high at the moment. My ferritin level is 4 but my haemoglobin is just borderline normal so my GP isn't concerned and has just told me to take iron ( which I struggle to tolerate).

    Like you though it is very difficult at times - I can feel so weak that I won't drive some days.

    Sorry - I'm not much help but I too would be interested in how others cope with fatigue.

    I hope that things improve for you.

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    • Posted

      The thing is that even though your blood tests are normal you can still have fatigue. My blood is normal but I still get fatigue. It is a tough thing to figure out at times. Naturally if something is off then that can be the cause, but in my case it isn't. One needs a doctor that is really knowledgeable in IBD and related problems with it. I have had some really bad doctors, no, just doctors that are not knowledgeable in IBD so they may not understand what to do for someone with IBD.
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    • Posted

      Hi Sarah it get worse as the day goes on and by the end of the week I'm glad it's the weekend lol
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  • Posted

    Hi Jon

    Have you had your Ferritin levels checked. Sometimes it can be very low without being anaemic and cause major fatigue, cramps, headaches, dizziness, aches and joint problems and make you feel very low. On top of dealing with a stricture and meds it could be making it all worse.

    If you do get your levels checked ask what it is or even get a print out and check the 'normal' ratio..... They'll tell you all is normal even when it is very very low!!

    Hope this helps

    Good luck with the new doctor and hope things improve soon.

    Hannah

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  • Posted

    Dear Jon

    I as diagnosed crohns 2 years ago, had several courses steroids, and developed a stricture. My gastroenterologist tried me on various meds

    pentasa methotrexate, mercaptapurine and others I can't remember the name of.This was after an emergency appendectomy!

    Eventually missing lots of work, tired so bad I just wanted to curl up and die, pain very bad some days.

    Eventually stricture had reached 20 cm and I had a cry in front of gastro. He put me forward for surgery to have a right side

    hemicolectomy, was off work six weeks and now four months later feeling so much better crohns in remission. I also had gall bladder out at same time.

    Tiredness is much much better and lack of pain is fab. I'm still not perfect but so much better, just kick myself not asking for surgery earlier.

    My stricture was in terminal ileum.

    I live in Cornwall and am under the Treliske (Truro) Hospitals Inflammatory BowelClinic team

    And my gastro is Mr Dalton, total hero, my surgeon was Mr Widdison. I was out of hospital within 48 hours . Hope all this helps

    Key thing is a good gastro and get referred to IBD clinic if not already.

    Good luck

    PS I'm 52 and female

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  • Posted

    Jon, from my own experience with this problem the most likely cause is low B12 and/or low ferritin levels in the blood. These can easily be tested for. B12 is easily put right by injections at your GP. Ferritin is more difficult as iron tablets are not easily absorbed due to Crohns. I have tried liquid iron (flavoured) bur effects were marginal. Best solution is a Ferinject iron infusion which can only be done at a hospital. Threshold for this is quite low at about 12 however in my case they said the ferritin level of 27 was falsely high due to high CRP so I got the infusion.

    Another cause of the problem is kidney failure but with this you also get loss of appetite and nausea. A blood test for potassium and creatin levels will identify this and if the potassium is too high you get a call from NHS telling you to check in to A&E where they put you on a saline drip to bring down potassium.

    Hope this helps. Best of luck.

    Patricia

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  • Posted

    Jon,

    i saw my gp yesterday about this,

    she did

    bp, weight, and I shall have bloods checked again.

    didnt get an answer about it!!

    she prescribed ensure plus drinks.

    my last bloods

    ferritin 6 

    b12 230

    she said these are 'normal' but ibd nurse said they are low end.

    so, I wonder if we suffer with symptoms even though are bloods are normal?

    is your diet restricted?

    i see you feel worse as day goes on, I wait for the kids to go to bed, so I can crawl into mine!

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    • Posted

      I saw your ferritin level of 6!!!!

      The lowest threshold is 12...... And with inflammatory disease even a reading under 50 is consistent with iron dificiency. They should not tell you that this is normal because it isn't. At the least they should offer you oral iron supplements and if you are intolerant an iron infusion.... No wonder you are tired!!!

      Might be worth checking the British Society of Gastroentorology guidelines to find out more.

      Hannah

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    • Posted

      Just thought I'd mention that the low threshold for B12 is 200....... Surely your doc doesn't want it to get any lower than it is..... Pernicious Anaemia is dangerous!!!

      No wonder us Crohnsies are fatigued almost to death when the doctors don't recognise that all these low iron levels,folate and B12 seriously affect our quality of life..... All things that can be rectified fairly easily!!!

      Good luck at clinic, I really hope they listen and help you out

      Hannah

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    • Posted

      Well I haven't got long to go I've tried talking about it to my specialist and my previous dr and I don't think be been taken seriously tbh! Would you be interested in how I get on ? You never know the tests I've had done recently mY have checked the levels you mention I've never heard of them . I have my bloods checked for my medication every 3 months at the moment Jon
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    • Posted

      Jon,

      i had to actually ask ibd nurse for them to be done.

      its def worth getting them done.

       

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    • Posted

      Yes we have an Ibs nurse who is very good but I'm going to wait to see what my Drs comments are first my specialist seems to think it's nothing to do with Crohns it's the hectic lifestyle we all live lol
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    • Posted

      It's worth doing a little research.

      I have had problems with all those particular levels and all are directly related to the disease activity and post surgical inevitability...... ie: losing sections of bowel that deal with those things directly!!

      It's a bitch disease so staying as healthy as possible is an ongoing battle.

      And yes, I am interested in how you get on....... It seems like there's a lot of us on here with low level ferritin and other things. Some get treated, most appear to be ignored. I'd love to see this change

      Hannah

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