What is the most frustrating or difficult aspect of living with ulcerative colitis?

Hi all, the most difficult things for me to cope with is always looking for the nearest toilets..whenever I visit someone for the first time, it's the first question I ask.

Mine is being intimate with my bf because its very difficult and embarassing when having to use suppositries before bed, im lucky i have a partner that understands my condition though its never the same as someone else having the same as you and really knowing it themselves what you go through.

Leaving the house. I can do it now (sometimes reluctantly) but in the beginning I was totally overcome by anxiety because I was too far away from the bathroom and had previously had accidents when I was out and about which completely traumatised me at the time (not so much anymore, if it happens then so be it! There's no shame in our game). I still haven't conquered public transport yet but I'm getting counselling for the anxiety and panic attacks and that's helping a lot. Stay strong everyone! X 

Hello everyone, 

How are you today? I thought I would revive this older discussion because we all may experience UC differently! 

What is the biggest challenge you face whilst living with ulcerative colitis? Is it the abdominal pain, the fatigue,  the loose and urgent bowel movements? Or is it something else more? Have you had to change aspects of your daily life or routine because of it? How do you cope with these challenges?
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Feel free to share here!

Take care,
Courtney

@Courtney_J For me it's been the cramps and the sudden and urgent need to go to the toilet. Some days even when I think I'm having a good day suddenly it will hit me and I'll need to drop whatever I'm doing and go. 

@TiffyT Since my colectomy I've been doing better overall, but I agree with you, the urgency and pain is terrible. That and the fatigue.

I quite agree with the symptoms of UC which you described  and I have never ever experienced  anything like the fatigue problem.  I've had this bout since the beginning of 'Lock Down'.  When is it going to end? Still there are some pure souls out there with far worse problems than mine.

 I was only diagnosed in Nov.. The fatigue is unbelievable. I was extremely fit before this illness.. I'm adapting well to the diet.. I add one new food maybe evey second day. 

For me, it’s not being able to do the most basic/normal things without constantly worrying about where the nearest bathroom is. For example, going out for lunch then getting straight in the car to drive any longer than 20 mins. Or going out for a nice long walk and taking a picnic/stopping for some food. People living without IBD would never have to think twice about doing things like that but the constant worry of ‘can I eat if I don’t know where the nearest bathroom is’ is exhausting. My partner gets it when I explain to him but it’s not something he considers when making plans, nor should it be! I’ve always had the mentality that life shouldn’t stop for this illness and I never want it to stop me from doing things but it’s always a worry in the back of my mind.