What’s something your doctors taught you or you taught your doctor?
My feelings regarding doctors has come around full circle this last 18 months. When I first started getting sick – for me it was food poisoning and the stomach flu – I was fobbed off with my symptoms being nothing more than just being dehydrated. Little did my GP know that I was falling to my first real Crohn’s flare up. The elbow swellings – commonly called erythema nodosum in rare presentations of Crohn’s disease – were missed by Orthopedic consultants as Cellulitis.
My trust in a doctor by September last year was at a low point. The flexi sigmoidoscopy they ‘gave’ me didn’t’ change my mind. I was certain at that point I was going to keep being poked and prodded for months on end before finding a diagnosis. Finally, a GI said “You’ve got Crohn’s disease in your colon.” AN ANSWER. A DEFINITE ANSWER!
I slowly began to trust again. I could then begin to put my faith into the treatments they suggested and adhered to them. Until I got C Diff for a second time. Until I got the Chicken Pox again. I was severely under weight and I was going to have to be fed by tube. I was at the lowest I could be. I was even immunosuppressed, I hadn’t got one. The Azathioprine has wiped my already weakened system away and let everything and everyone attack it. I didn’t know where we could go from there. I just sat helplessly in an isolation bed thinking that this would be my life for a very long time.
Flash forwards through my remission six months ago, to today. I am currently at the end of 12 months of Humira – Anti TNF medication to correct my immune system genes – and I feel awful again. Not flare up awful. Not Crohnie sick awful. I feel utterly unhappy. My medication is working and has done its job for almost a year, but now, I am finished with it. I have no active disease. I’ve achieved and maintained my remission with this drug, but its side effects have more effect and emotion on my mental and physical health than I care about continuing remission.
However, no GI thinking I am being serious. I have the long and arduous task ahead of me, of convincing my GI and IBD team that really, Humira isn’t my best plan anymore. Yes, I accept the risk of coming off Humira – more BMs, more flare ups, possible dehydration, insomnia, abdominal pains, cramps, loss of wages, depression – but why should I risk the side effects of Humira for more than the NICE guidelines specify?
I hope I can show and explain to my GI that I understand my body and my guts more than a test result can tell him. I live with those cranky guts 24/7 and I am best friends with them.