Ben is 28 and was diagnosed with Crohn's in 2006. He has a blog called MeandMyCrohns. He's pictured here in a dinosaur onesie (everyone should have one of these!) at the recent Rutland Walk, raising money for Crohn's and Colitis UK. This photo was taken shortly before he completed a 25 mile bike ride on a tandem with his wife (also in a onesie).
Real friends understand that you may have to
drop plans/leave pub/activities
A big part of being young is socialising,
yet this can be one of the more scary sides to living with an Inflammatory Bowel Disease (IBD: Crohn's Disease and Ulcerative Colitis). You can work
yourself up into a state and cause yourself excessive amounts of stress. You
find yourself over thinking situations that your friends wouldn’t even begin to
consider.
Pub toilets (I can only speak for the
men’s) can be terrible places if you are unprepared. Certain drinks can cause a
tummy upset. Meeting friends in the middle of a field for some kind of sporting
get together can be a daunting proposition.
You worry that the toilets may be too far
away, or what happens if you have an “accident”? What will your friends think
if you cannot join in with the drinking games because unbeknown to them you
have started a new medication that you shouldn’t be mixing with alcohol? Or
will they be mad if you are late due to a last minute dash to the loo that
turned into an hour long epic bowel battle?
All of these thoughts can cause your head
to whirl and you may end up cancelling the event or your participation in the
activity.
This is an upsetting position to find
yourself in; I know because I, like every other sufferer, has at one time or
another been there. You become hard on yourself, you feel like a letdown.
I am massively stubborn and refuse to let
my Crohn’s Disease rule my life. It has and always will influence my choices
but ultimately I will not allow it to dictate what I can and can’t do. This
approach to a life with IBD can sometimes catch you out as Mr Crohn’s will try
and assert some authority.
You may find yourself in a pub attempting
to hover over the most disgusting toilet you have ever seen whilst
simultaneously trying to keep your jeans from touching the gross, urine sodden
floor or maybe when you believe you are in a safe position to be able to pass
wind only to find it wasn’t wind and you are now in a field with a group of
mates and something terrible lurking in your underpants.
It is these situations that either make you
or break you and I can honestly say you need to be strong. These incidents are
only temporary but they teach you to be prepared. You take wipes with you on a
night out to ensure the toilet can be cleaned or you carry a spare pair of
pants in your bag just in case. Baby wipes are good as they can help clean you
up and make you smell nice as can miniature deodorant cans – the pocket sized
ones.
You can do all this in silence but it will
eventually get you down and take its toll on your mental well being. The best
way to cope with Crohn’s or Colitis is to be strong and confide in your closet
friends and family. They may not fully understand what you are going through
but they will be even more in the dark if you do not share.
Friends will
understand that certain activities are just not suitable for you or that you
may need extra time or help. Friends will be there for you in your time of
need. They may offer to help you get to a toilet or call you a cab. Friends and
family just want to help. They may not know the correct thing to say or do but
they are well intended. So help them out. Point them in the correct
direction for helping you. Like the Crohn's and Colitis UK information sheet - Understanding Crohn's and Colitis
If you do not confide in your friends, they
will never be able to help you. This
doesn’t mean they will be perfect. Even the bestest of friends will forget your
needs. This is not because they don’t care; it is simply because they see you
day to day looking fine. Crohn’s Disease and Colitis present few symptoms on
the outside. It’s not like you are missing an arm, or you have lost all of your
hair, so there are minimal tell tale signs of being poorly. This can be
frustrating when people assume you are well just because you are not moaning
about. They forget that the Disease is a battle each and every day it is just
that some days are easier than others, so not every day warrants a moan. We
save our moaning for the really bad days.
I guess what I’m saying is; we are
suffering a disease that is hidden from public view. Nobody feels comfortable
talking about bottoms, bums, farts and poops so we need to step up to the
table. We are the ones who need to educate those around us. Do not suffer in
silence; our friends and family care about us. Plus, with a fantastic network of
support around us, we are very lucky.
Crohn’s and Colitis UK offer so much
support and information to those affected by IBD. Smilies helps take child
sufferers and their parents away from their troubles for a few hours, Me and IBD offers support to teenagers and young adults and Crohn’s and Colitis UK as a
whole covers all ages.
We are not alone in this struggle. It may
feel like it at times, but be open, take the information available and pass it
on.
Ben
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