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Fatigue Fatigue Fatigue!

Posted , 7 users are following.

Sadly
Sadly

Hi all

I’m a 47 year old woman with small bowel Crohn’s. Since the onset of this illness 15 years ago my overarching and by far most debilitating symptom is fatigue, I mean literal bed bound at times fatigue – prior to diagnosis I was so fit and healthy I ran marathons yet now I could easily be mistaken for a Chronic Fatigue Syndrome patient. This fatigue slammed its way into my life and has never left whether my Crohn’s is active or not it’s always with me. Does anyone else suffer in this way? Any tips or advice? I’ve tried so many natural, herbal and alternative remedies but nothing helps. My life has slowly become smaller and smaller – I feel buried alive…..

Thank you for reading

1 like, 12 replies

12 Replies

  • justyna17617
    justyna17617 Sadly

    Posted

    Hi Sadly,

    I also suffer from the same thing (had crohn's for 16 years now) and I know how bad fatigue can get. Get your doc to check your vitamin b12 and iron levels as people with crohn's don't absorb them so well and it can cause your fatigue to be really bad. That was the case with me and since I've started taking vitamin b12 supplement I feel like a different person. Hope that helps xxx

    • Sadly
      Sadly justyna17617

      Posted

      Thank you so much for replying Justyna.. it’s good just hearing someone say “yes I’ve been there” this disease can get so isolating and overwhelming. I’m going to contact my gastro nurse on Monday and ask for a blood run - I’ve not had them checked for absolutely ages as I’m awaiting a small bowel resection. My current care is therefore in the hands of a colorectal surgeon, I think my gastro team have forgotten me! Last time I had blood work done I was admitted for an iron infusion the very next day my iron was so low!

      thanks again and I hope you continue to be as well as can be 💟

    • justyna17617
      justyna17617 Sadly

      Posted

      Glad it made you feel a little bit better and hope once you get your bloods done it will help your fatigue out. Good luck and all the best xxx
  • IndieHannah
    IndieHannah Sadly

    Posted

    I agree......get those B Vits checked and Ferritin and Folate. I have small bowel Crohn's too and suffer the same thing. Infusions of Ferritin, Folate supplement in liquid form and B12 jabs every 8 weeks keeps me functioning. 

    My life without those things becomes very very small. 

    And it's awful !!

    Good luck x

    • Sadly
      Sadly IndieHannah

      Posted

      thanks IndieHannah - I absolutely hear you! Ive forever needed folate infusions in the past so It makes sense that things will have slipped not being checked for so long... it’s very kind of you to answer. Thanks again and I hope you’re as well as can be 💟

  • penelope8817
    penelope8817 Sadly

    Posted

    I have Crohn’s colitis and my worst symptom by far has been chronic fatigue. It doesn’t seem to get much better whether I’m in a flare or not!

    I had low iron levels and b12. I had iron tablets for 4 months and now have b12 jabs every 3 months which dies help. I find keeping to a strict exercise and diet regime helps me immensely! 

    • Sadly
      Sadly penelope8817

      Posted

      You echoes me precisely Penelope- I just can’t understant why the fatigue lingers on with such debilitating force when folk are in remission. I think it’s the hardest part for Consultants’ to understand, even friends and family struggle with it, many people seem to think fatigue means tired - if only!!! It’s a cruel opponent... thanks again and it’s good to hear your coping strategies help! 

      Wishing you well 💟

       

    • penelope8817
      penelope8817 Sadly

      Posted

      I know it really is so frustrating because if your blood levels are back up to normal then doctors just don’t know what to do!
    • Sadly
      Sadly penelope8817

      Posted

      Yes!! And we are left feeling worse than ever and even more isolated! I’d sell my soul to be rid of the fatigue more than any other aspect of this illness xx
  • Anna-km
    Anna-km Sadly

    Posted

    I don’t have any advice, just want to say I hear you. I said to my Gastro that I felt like I’d never be the same or back to normal and he agreed that I probably wouldn’t....I’ve been in deep remission for 5 years on Infliximab but recently have started to feel like things are not going well, but the fatigue is one thing that’s always been with me to some degree 
    • Sadly
      Sadly Anna-km

      Posted

      Thank you for the thought and taking the time to write Anna -km. again it makes a world of difference to be heard, you’ve hit the nail on the head too - for some of us we really are never the same again once Crohn’s invades, I know for sure I never will be and I’ve had a very long time to watch it happening to me while I looked on and helplessly grieved. To date drugs have had very little impact on my disease processes. I’m glad you’ve had some success with infliximab - I think quite a few new drugs have come along since infliximab so hopefully if you need to switch there will be a smooth transition. My heart goes out to you. Thank you again and I wish well 💟

  • stephaney28634
    stephaney28634 Sadly

    Posted

    Hi, I have had Crohn's for 10 years, I am getting Inflimaxb Infusions Treatment and I still suffer from fatigue its' just want it does if you have a flare up or not.

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