Saturday, 14 October 2017

The Rules of Crohns Disease

I am perennially asked to share various experiences about Crohns disease - a chronic, non-contagious autoimmune disease causing inflammation and eventual deterioration of the digestive system.

I have had Crohns for at least twelve years.  I weighed no more than eight stone at my worst. During the first five years I was constantly in pain to the point I forgot what it was like to be calm and approachable and that is a very frightening place to find oneself.  I have tried immunosuppressants and corticosteroids to point where I thought I would rattle when I walked.  However,  I am now a full time lecturer in Chemistry at Exeter University.  I’m a healthy weight and go to the gym three days a week.  I’m no longer in pain.  I’ve never needed surgery beyond the removal of my appendix.  Life is very good.

I keep this picture in my wallet to remind me how crazy I was back in the day.  I thought I was smiling when this was taken.  Pain will do that to a body and a soul therein. 

The format of the enquiry varies: a phone call from an old friend whose drinking buddy can not sleep for worry since their prepubescent daughter was diagnosed with an as yet indeterminate colitis; the neighbour-teacher whose popped in for a cup of tea and mentions her ex-pupil who is currently hospitalised after recent diagnosis; a colleague who, after learning why I do not want to pick mushrooms because of my illness, will suddenly darken in mood and voice and share their experiences of their sibling who is struggling to maintain both their weight and their relationship with them despite potions and pills of every form.  Whatever the delivery, the deeper question they are all looking to answer remains the same; How do we take the pain away as soon as possible?

I can imagine this is disheartening news to those affected by Crohns to hear that there is no immediate fix. However, I always add a corollary statement: I got better by making sure I accepted The Five Rules Of Crohns.

The rules are my own creation and in no way endorsed by anyone other than me and my digestive tract (sometimes I think of it as something outside myself - a trait I have since learned is shared by many suffers).  So why should you listen to me?  Because I am vertical.  Because I am on only the basic medication with approval of my physician. Because I make a living out of spotting patterns and applying rules to them.   So before I get down to it, in light of what I have just said, here is zeroth rule (if Thermodynamics can have one, then so can I).

Rule 0:  Everyone is different, every disease develops differently.

The rest of the rules will follow shortly.  If you can not wait until then, please do get in contact.

Sam