Trying to Find Balance With Ulcerative Colitis Pain

I have experienced sooo much pain over the years, thanks to ulcerative colitis. So much so, that I found myself learning to just function with it to a certain extent.

I never took a day off work, because I knew that I would stay home feeling like I had been beaten. I never want to accept that my disease has control, and I don’t want it dictating what I can and can’t do.

But the pain can be so much to manage.

Pain management for ulcerative colitis

A couple of weeks ago, I was supposed to be going to my cousin's birthday celebration. I had a blockage, and I spent the afternoon in bed with a water bottle, and I had taken some additional painkillers. We have less of an issue with pain relief in the UK, although it does look like change is coming! I find myself wondering how I will be able to function without it...

Anyway, the time came to leave the house, and so I laid there contemplating my options. Something that I’ve done over and over again since being diagnosed with ulcerative colitis.

Do I show up for a short time? Or did I not go and stay home with my water bottle? Or, should I go and take the water bottle with me? But, I really don’t want people to know there’s anything wrong with me...

If I stay home then I have missed out. I might really enjoy it.

But, what if I go and I don’t enjoy it? I don’t want to be a party pooper – pun intended!

I will be in pain regardless of whether I am at home in front of the TV or sitting around a fire in someone’s garden, in the company of people I like!

Managing my pain in social settings

I went. I went prepared with an extra bag in case there was a sudden rush of liquid output and some gelling sachets for the same reason. I took a bottle of water and some painkillers with the intention of only drinking that.

It was weird because a couple of people did actually notice that I wasn’t my usual self. It probably didn’t help that people were eating and I didn’t. I was surprised because I am usually so good at hiding it... Maybe being isolated for the past year due to the pandemic and not needing to wear a mask had seen it slip!

I did start feeling better maybe an hour and a half in, so I AM really glad I went, but still completely thrown off by people noticing I wasn’t feeling well. I had a slice of plain pizza, drank my water, and enjoyed my evening. I am glad I went!

Constantly juggling my colitis pain with life

I feel pretty annoyed that this is my life so frequently.

I often find myself having to decide whether to go to a social thing. Or weighing up how much I need to relieve pain against everything I need to get done that day that might require concentration, which the pain medication can make more difficult.

I constantly have to think about what I want to do, and whether the pain I might experience because I have done it will be worth it.

It doesn’t seem fair, but, it is what it is. This is my life. And as much as I am now used to this constant weighing-up process, it’s not a normal life. It’s just my normal!