It could be the paranoia of experiencing an accident whilst out.
It could be fistulas or abscesses.
It could be the scars from surgeries.
It could the embarrassment of a chronic illness.
It could be the lack of confidence you feel because the Crohn’s will never go away, only fade at times.
It could be medication side effects that make you feel depressed.
It could be the comments people make about your appearance or appetite.
It could be always cancelling plans or ending up in hospital.
For me, it’s explaining to my GI and IBD nurse just how painful my pain is at times.
I don’t want to burden them with yet more problems relating to my treatment.
This seems to be so trivial and stupid in the grand scheme of things. And I do wonder sometimes how much better my care would be if I was completely honest. But in the same thought, I know that if I was completely and utterly honest with them I would be subjected to so much more pain and testing. I would be constantly at the beck and call of the hospital and appointments, and I’m not particularly keen on that being my life once more. It could be much worse this time around and really, would it be completely necessary? Would it be help me? Would I benefit from being that honest with them?
I don’t go into clinic appointment with my GI or go into a phone conversation with my IBD nurse with the intention of lying or even exaggerating the truth to get something done faster, I just explain what is most important and relevant at the moment. I would hate to be the girl who called wolf. It has been suggested to me lately – what with my increased pain, problems and aches – I should be brutally honest. I should get angry and not quit until I get the answers I want. But what answers do I want? What exactly am I asking for?
What I want to have is a good relationship with my medical team. I want us to have the same goal: AVOID SURGERY UNTIL IT ABSOULTELY NECESSARY.
I remember certain days in my Crohnie life more than I remember my life before it. I can’t remember my university Graduation but I can remember the day they diagnosed me and told me surgery was the last option at all cost, like it was yesterday. It wasn’t, it was almost two year ago now, but I still hold on to that, that they want to try everything before they cut me open. I’ve made most of my peace with the fact it will happen at some point in my life, but avoiding it so far has worked. I am still able to work and enjoy my life and I am not on massive amount of drugs anymore. I’ve got a blip going on at the moment, but for the most part I am okay. But when the pain strikes and hits me hard, I think back to all my medical related talks with doctors and nurses and I wonder about the path less travelled: BRUTAL HONESTY.
Would things be different if I had mentioned all this underlying pains when we last spoke? Would they have noted it and tried to solve it? Would they want to solve it? Is this pain outside of the realm of their medical jurisdiction? Is it even relevant?
Of course, all pain is relevant to my life. But is relevant to my Crohn’s and its treatment?
How do I even go about solving this problem? How do I make my relationship with my doctor better?
How do I continue my good friendship with my IBD nurse? How do I get more out of her?