Day Twenty Three – What My Doctor Has Taught Me

Day Twenty Three – What My Doctor Has Taught Me

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.


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