Blog Series – Conditions Associated With IBD – Fatigue
Welcome to my new blog series which is all about conditions associated with IBD. Many people see Crohns and Colitis as ‘pooing’ diseases, which is actually only part of the problem. IBD can cause many other symptoms and conditions which may need treating with more medication, surgery, or may just have to be tolerated by the person suffering. I have been very grateful to the many members of the IBD community who have shared their problems and experiences with me. You will see interviews and quotes with these people throughout the posts to help show what effect these extra conditions and symptoms have on people.
Fatigue
The first symptom I have chosen to write about is fatigue. Not only does IBD itself cause fatigue, but so do many other related IBD conditions including anaemia, anxiety and depression. Regular blood tests should be carried out to check levels of nutrients including iron and B12, especially when you have an ileostomy, as they can drop easily and you may need supplements or infusions.
I have to have vitamins A, D, K and B12 checked every twelve months because the Colesevelam tablets can lower the vitamins in the body. I have B12 injections every 12 weeks because after having my first ileostomy and having 80% of my colon removed I stopped producing B12
Sue, Crohns Colitis diagnosed 1997, sub-total colectomy with ileostomy (2009), ileorectal anamastosis (reversal) (2000), permanent ileostomy (2016)
I find fatigue one of the most difficult symptoms of my disease to cope with. Fatigue is not the same as tiredness. When you have fatigue, you wake up still tired. Taking a shower zaps you of all your energy. Sometimes you sleep for hours and doze the day away, but it doesn’t seem to make a difference. I desperately want to do more at times, but my body just won’t let me.
Fatigue affects me mostly through work and travel. I had to quit a job I loved because the travelling was taking it out of me. I’m now working close to home but they are not so understanding of my needing more toilet breaks or my fatigue or how sometimes I just can’t function. I have no social life whatsoever because after a full days work I almost physically can’t move and at weekends I am still recovering
Tiffany, fistulating and severe Crohns diagnosed Dec 2017 and runs the blog Tiffany Nicole
Having an ostomy can also affect your sleep, something they don’t warn you about before surgery. I struggled at first as the disturbed sleep was hard to get used to. I generally need to empty my bag at least once during the night and often need to ‘burp’ my bag multiple times, as I seem to get terrible wind at night time! This does get easier the longer you have your ileostomy and is something you do get a bit more used to, but some people still struggle immensely with this.
I don’t get a good night’s sleep because I wake after 5-6 hours to check my ileostomy bag doesn’t need emptying
Sue, Crohns Colitis diagnosed 1997, sub-total colectomy with ileostomy (2009), ileorectal anamastosis (reversal) (2000), permanent ileostomy (2016)
Fatigue affects every area of your life, including work, social life and even the everyday tasks like shopping and cleaning you have to do.
Fatigue has been affecting me every day for the past month. I can only just manage to go to work and do what I need to do
Suraksha, Crohns diagnosed 2007, permanent ileostomy (January 2016) and runs the blog Guts, Giggles and More
Things That Can Help
Unfortunately, there is no magic remedy for fatigue. Rest helps, but often after a good night’s sleep you can still wake feeling exhausted.
I don’t know what could be done to help except sleep but that can be hard especially if I am at work. I find it is one of the hardest symptoms to overcome
Sue, Crohns Colitis diagnosed 1997, sub-total colectomy with ileostomy (2009), ileorectal anamastosis (reversal) (2000), permanent ileostomy (2016)
The NHS Choices website has some great self-help tips for fighting fatigue here.
They suggest
- Eat more regularly, smaller and healthy meals and snacks
- Exercise
- Lose weight if overweight
- Sleep well
- Reduce stress
- Talking therapies (counselling, CBT)
- Cut out caffeine
- Drink less alcohol
- Drink more water
I try and rest as often as I can and do things little and often. It’s important I don’t over do it as it set’s me back to the start and I find myself worse off than I originally was
Suraksha, Crohns diagnosed 2007, permanent ileostomy (January 2016) and runs the blog Guts, Giggles and More
Ensuring you have had up to date blood tests is also a good idea, so deficiencies and problems like an under-active thyroid can be ruled out if the fatigue is severe.
There isn’t much that helps I’m afraid. Drinking plenty of water, listening to your body and getting checked for anaemia/vitamin deficiencies. Taking iron supplements has helped a little
Tiffany, fistulating and severe Crohns diagnosed Dec 2017 and runs the blog Tiffany Nicole
Personally, I try and plan my weeks so I have plenty of rest time, especially when I have a busy or full on day coming up. Daily, I have lists of jobs that need doing, and ones that I would like to get done. Routine is very helpful. If I push myself too hard, I know the next day I would really struggle to even get out of bed so it really is not worth it. I find setting an alarm (NOT snoozing it) and getting out of bed at the same time every morning helps me feel more awake, as does doing a bit of exercise first thing. If I let myself slouch on the sofa I find myself feeling worse, and after that initial feeling of grottiness goes away, keeping busy does tend to help.
A good night time routine is also key. Switching off in this digital world is hard but really helps me unwind and get ready for sleep. I love to read or will possibly watch something on Netflix in bed. I have a ‘do not disturb’ setting on my phone which turns off my notifications which is easy to do and makes sure I am not distracted while winding down. Lavender candles and pillow spray, a relaxing bath or shower and sometimes a nice pampering face mask also help me to relax.
As has been said, by me and the people I spoke to – fatigue is one of the most challenging symptoms that affects all aspects of your every day life and there is no easy fix. Hopefully, you will have read some tips and tricks that you haven’t tried that will help here. Please comment below with how you try and tackle fatigue, I would love to read some more ideas and share them with my readers
The Spoonie Mummy 
Thanks for the information…
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You are welcome x
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I take 40mg of Rabomeprozole for my GERD which seems to help somewhat. I still find that with some meals I get a really tight throat am so fatigued I’m not comfortable even driving. I wish I could pinpoint which food causes it or if its just a general reflux/inflammatory problem. I’ve eaten pretty heavy meals before and felt fine; while other meals knock me out. I’ve even fasted to avoid this feeling and get a similar feeling when my blood sugar is really low. I can regularly sleep for 11 or 12 hours if work permits it. I dont know if i have a food intolerance or what. Any thoughts?
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Have you tried keeping a food diary? This can help identify foods which may be causing an issue. Try writing down everything you eat and when you experience these symptoms every time for a couple of weeks and look for patterns. Hope this will help, Natalie
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Antacids will never cure GERD. They simply mask the symptoms and actually cause the same problems! You need something to help you produce more stomach acid, such as betaine with pepsin.
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