The truth of living with inflammatory bowel disease…

The truth of living with inflammatory bowel disease….. (the stuff they don’t tell you

  •  The fatigue – having 12 or more hours sleep and waking up like you haven’t even slept.
  •  The leaky bum- gross I know but it happens- imagine the feeling of opening your bowels but not knowing?
  •  The toilet anxiety- the huge anxiety around finding a toilet in time. 
  • The lack of understanding/compassion from friends/family and members of the public – it’s a lot more than a poo disease.
  • You will probably end up knowing more about your disease than a GP. 
  •   The endless GP/hospital appointments. the blood tests- colonoscopies,sigmoidoscopies and endoscopies… because who doesn’t love a camera down their throat or up there bum? (No paparazzi please) 
  • The mountain of medications.
  •   The effect the disease has on the rest of your body- you develop an illness you didn’t even know existed. 
  •   The pain 
  • The sleepless nights 
  • The suppressed immune system- being prone to catching ANYTHING. 
  •  Poo isn’t a taboo subject – you end up talking to anyone and everyone who listen. 
  •   The fear of the unknown
  •  The huge effect the disease can have on your mental health. 

These are just a few things that I’ve experienced since being diagnosed with Ulcerative Colitis. 

4 thoughts on “The truth of living with inflammatory bowel disease…

  1. I think it is a real shame that patients are not getting more information at diagnosis, which is why CCUK trying to get a patient pack to every newly diagnosed patient is so key – but needs volunteers at a local level. Your fundraising helps too though!

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