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Beyond Tired: What It

Beyond Tired: What It’s Like to Live with Fatigue and IBD

When it comes to describing our IBD symptoms, we tend to talk about our bowel habits a lot of the time. That’s all well and good, but there are many extra-intestinal manifestations of IBD that can cause problems too; even if we are technically in remission. Today, I wanted to chat with you about fatigue; something that lingers in my life whether my colon is behaving itself or not! We often hear the word being used but what does it actually mean? What does fatigue like? And can anything be done to stop it? Let’s discuss…

What is fatigue?

To me, fatigue is a feeling of utter exhaustion that just doesn’t go away after a good night sleep. Everyone gets tired from time to time, but an early night will leave most people feeling refreshed again. With fatigue, you question as to whether you really did sleep last night at all as it feels as if there’s no real relief from it when you wake up. It’s not just a case of nodding off. For me, my whole body can feel heavy and exhausted. And if I take a nap, I’m left feeling no better for it. Fatigue also goes hand in hand with brain fog. that feeling of being ‘woolly’ headed and not being able to think clearly.

What it’s like to live with fatigue

I’m lucky that I don’t always suffer badly with fatigue. There are definitely periods where it worsens; such as busy times (e.g. Christmas), when I start a new medicine (a new biologic caused my fatigue to worsen temporarily) during winter months and, of course, during a flare. The worst thing about fatigue for me is not knowing when it will strike.

Sometimes, we’re lured into a false sense of security so forget just how debilitating it can be. So I might agree to that extra work or book a week of social occasions, until…Bang! It rears its head and I can barely lift mine off the couch. Essentially, you have to plan your week carefully to avoid burning out. Even if you feel perfectly fine at the time you always need to think about ‘rest’ days or periods and not overbooking yourself. The most frustrating aspect is that it can feel as if it will never go away when it is at its worst. It’s difficult to concentrate on anything but extra sleeping feels pointless too!

Can anything help with fatigue?

I definitely think there are a few things that can help with fatigue. For me, I am much better now I push to get my vitamin levels checked. Iron, B12 and Vitamin D deficiency can all lead to fatigue for me (and this is a common symptom of being deficient). I switched from regular supplements to liquid forms of these (to help me digest them better) and found it really helped with my vitamin stores and fatigue too.

It sounds boring but making sure I don’t overfill my week is vital. Being self-employed makes a massive difference as I can be more flexible in this regard. But when I feel a crash coming, immediately putting down my laptop and retreating to the sofa can prevent a bout of fatigue turning into total burnout.

To an extent, diet helps too. When I’m exhausted, I naturally crave sugary things but this can lead to huge energy dips an hour later. I always try to make sure I eat regularly to keep my blood sugar steady. Ideally, I’ll think ahead when I’m feeling well and batch cook. So I have some meals prepared on low-energy days but otherwise, just the act of eating regularly is vital.

Exercise can be impossible but fresh air can help me lots; so trying to find some time in the day for low-intensity walks with my dogs can help me slowly get my energy back too.

I hope you’ve found these tips useful. I’d love to hear your thoughts on fatigue too below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Dixielyn6
    1 week ago

    I have always struggled with fatigue after Mx mono diagnosis but the last few months I have been debilitated to the point of having to take a leave from work and literally just sleeping and “on a semi good day” getting to dos done .
    I was diagnosed with crohns 6 years ago and things have gotten far worse .
    I’m having issues now with severe pain, numbness , swelling of bil hands to the point of dropping things Mx times a day and most days not able to do my ADLs bc of the severity .
    Any suggestions would be greatly appreciated as well as the support . I’m new to the group and am hoping to find support and relief as I have no quality of life left and family/friends/coworkers just don’t understand and don’t try to understand.

  • JenniferKay
    3 weeks ago

    …I’d love to know what foods you eat when you hit this level? Im having such a difficult time with food right now, it’s just adding to my anxiety. Ugh.

  • JessicaH moderator
    2 weeks ago

    Hi @jenniferkay, we can completely understand the anxiety your feeling around food. Hopefully, others in the community will weigh in. In the meantime, I thought I would share an article where we asked others about helpful and not-so-helpful foods here. Also, you may be interested in posting your question in our Q&A section. Please know we are here for you. Hugs, Jessica- Team Member

  • KeithMoon
    9 months ago

    Thank you for this article. I have been scouring the internet looking for Crohn’s people for whom fatigue is a major issue, as it is for me. Mostly to find some way to still function while dealing with the latest bone crushing episode. I’m going to share this with certain friends and family members as well. Thank you, again.

  • Pam.Kingsland moderator
    9 months ago

    Hey @keithmoon! I’m so glad you found this article helpful. Believe it or not (you probably will), we hear often from our community members that fatigue is the most common and most despised symptom of IBD.

    I thought you might find these articles relating to fatigue interesting as well:

    Thanks for being here! Please feel free to reach out to us anytime. Warmly, Pam (team member)

  • KeithMoon
    9 months ago

    Thank you, Pam.

  • Amanda Osowski moderator
    1 year ago

    I also struggle with fatigue (which has been amplified since getting pregnant) – thanks for sharing these tips!

    Amanda (team member)

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