In Crohn’s literature, remission is a term not vastly used, unless talking about the predictability of it when a patient is taking a certain medication. It is defined as ” the state of absence of disease activity in patients with a chronic illness” and then adds; ”with the possibility of return of disease activity”.
I, for one, have servere Crohn’s Disease and take bi weekly Humira injections at 40mg to keep my symptoms at bay. For me, remission means not pooping more than twice a day and a pain free belly. I could also add in no achy joints, but that makes it abit more complicated seen as those aches and pains come and go regardless of my Crohn’s symptoms. If you look into biological remedies for Crohn’s Disease – which you are introduced to once your Crohnie bod fails to react / respond to other low level medications such as Pentasa and Azathioprine – they strongly suggest that these types of medication – Infliximab (Remicade) and Adlimumab (Humira) – maintain the progression into remission.
I’ve spent 9 months on Humira and finally achieved a state of remission. There is no active disease in my body – CRP was just 3 a week ago – and my general demeanor in my own assessment of my health is positive, and nothing like it was 12 months ago. I didn’t expect remission to come so quickly, or creep upon me like it did. For me, one minute I was having problems with doing my injections and experiencing quite bad panic / anxiety attacks the next, it was September and my GI cleared me for full time work. Remission was finally here. Humira had done its job and got me back to a state of complete and utter normality.
In theory, that is a wonderful thing, a grand achievement. However, it can quickly bite you in the ass. Slowly but surely, those comments regarding the wellness in my face and my physical attributes has come back round again; “But you don’t look sick” is coming out of people’s mouths once more. Hm.
My response to this is of confusion.
Mention the word remission to anyone and most of them go down the cancer path; the “they’ve cut you open and removed what was wrong and finally after therapy of some shape or form, you’re yourself once more” route. That is a fine and perfectly acceptable definition of remission to any average person, and I am most certainly not denying it, but they – the doctors, surgeons – did not cut me open and remove anything. The closest I’ve come to seeing my ‘disease’ is briefly watching my GI move a camera around my colon to find a hell of alot of inflammation before sucking on the delightful gas and air. To everyone but me and my medical folder, I am nothing more a ‘interesting character’; they see no scar, no apparent and obvious representation of my condition. It is hidden away in the depths of my large intestine. Only a camera on the end of a stick sees my disease.
So why should I expect anyone but other crohnies to be sympathetic to my frustration over the phrase “but you don’t look sick”? Who would understand my internal desire to show my flexi sigmoidoscopy results? Of the vast quantity of angry, red ulcers in my colon? Because that would be “disgusting” and “undignified”. At times, I agree. At others, I wish my desire to be brutally honest and truthful would come out like word vomit, so that people would quickly retract their insensitive comments about my body, when they are ignorant enough to offend me with their uneducated guesses about ‘remission’ and ‘that IBS related thingy’.
I fear that until I have some sort of relapse – which I’ve been assure is some what guarantee; the only thing my IBD nurse and GI could quite unilateral agree on – in the future and need surgery, my scar less body will have to continue to deal with idiots from time to time. Dependent on my mood – and I wish so much that it wasn’t so – depends on my reaction. I would like to be sincere and be honest in a positive way, but there are some characters in life that just frustrate you from the get go. Those will be the ones who will get some shocking truth. Those who are closes to me, those who try to empathise with me and get some what involved with the right positive attitude will get the same back: a positive description of what I’m going through.
I think that what I must do is try and keep on this path for as long as my Crohnie body will let me. That I shall continue to step forward and help myself and others where and when I can. That my remission should mean a new and exciting chapter in my Crohnie life. I should be celebrating the things I will now be able to do instead of focusing on the frustrations that are keeping me fearful and unhappy.