I've had friends and family look aghast, shocked and even burst into tears to see me hurting. Its easy at times for me to forget just how bad the pain can be. To make things easier to bear for the people on the outside of my colon, I often find myself saying things like "Don't worry, I'm used to it!" - I am. I'm in pain a lot. But the truth is, I don't think you ever 'get used to it' you just learn to live with it. Over time pain changes and you learn your own wee ways to cope and distract yourself, or even ease it.
Crohn's pain is said to be similar to that of contractions. Never having popped out a bambino I can neither confirm not deny that, but I do understand where the comparison comes from. For me it normally comes in waves, sharp agonising pain every few minutes, getting closer together until eventually it's Pain City.
However the pain can also be a kind of dull ache or cramp, like trapped wind or period pain - but never the same - it's a feeling all of its own, which often makes it nigh on impossible to describe.
I have noticed I've developed certain tics over the years that I seem to go back to when I'm feeling at my worst. I clench my fist. Only my right one mind, two would make me look like I'm mental and I don't want to be caught walking through the streets with a screwed up face and two clenched fists, all kinds of hijinks could kick off.
I try to steady and slow my breathing. Maybe the contraction comparison gave me this idea, but it helps to calm me down if I get in a panic. For example if the pain hits when I'm at work or on the bus or doing a bungee jump. I often think 'I'm going to throw up, I'm going to collapse' - not productive thoughts so it helps to take a minute to slow the brain down. It also works as a sort of temporary distraction from focusing purely on the pain.
It must be hard for doctors to establish exactly what line to take because pain is subjective. One mans kick to the balls is another mans severed leg. (Obviously I use 'men' in this analogy as they have a lower pain threshold..And balls)
I find it difficult to describe my pain because I often don't realise just how bad it is. As I mentioned earlier I revert back to the old 'I'm used to it' chestnut. Just because I deal with it regularly doesn't necessarily mean I should be putting up with it though.
I suppose I settle for what I have, pain-wise. These painkillers will do, a day off work and I'll be fine, a lie down and I'll be better in an hour. Maybe not. Maybe I need to go the hospital or maybe I need to see what other meds I should/could be on. But as a Crohnie hospital isn't a place you want to frequent unless completely necessary. We spend enough time in them already for gawds sake!
But at the end of the day, only you know your own body and only you know what you can and can't bear. If it gets too much see someone qualified to help you. Don't be afraid of hospitals; it'll suck for a while but at least you won't have to feel you are alone and in the last throes of of existence. Pain is.. well, it's a pain. Like any other pains in your life don't tolerate it.
Be proud of how you deal with your disease but not too proud to seek the help when you really need it.
I'm telling myself this as much as you..
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